StemCell Therapy

SWNS

Keith Young, 69, was bedridden when he was hit by crippling arthritis in both knees three years ago.

Mr Young, who was a keen scuba diver, golfer and fisherman, was in so much pain he considered ordering a Zimmer frame or undergoing knee replacement surgery.

However, in a final attempt to avoid these desperate measures he tried inserting copper insoles into his shoes.

Within five weeks, the retired print firm boss noticed the pain was beginning to ease and now he is back on the golf course.

Mr Young, from County Kerry, Ireland, said: I had arthritis in both knees. It was getting worse and worse.

I'm overweight and 69-years-old and I was dreading the thought of needing two replacement knees.

SWNS

I felt like I didn't have much to live for but now I can honestly say the Copper Heelers have been a life saver.

Keith Young

It got so bad I ended up walking with a walking stick and was considering a Zimmer frame.

The father-of-three believed he was being plagued by old football injuries when he began to feel pain and discomfort in his knees.

He visited the doctor who told him to see how things went for a while and 'come back if his condition worsened.

Within weeks the arthritis began to impact on his ability to enjoy his normal active lifestyle.

SWNS

The pain and the swelling were unbelievable. I took so many anti-inflammatories and paracetamol.

I was at my wits end. I used to stay in bed two days a week and then I ended up bedridden.

I was extremely depressed and putting on more weight due to the fact I was unable to exercise.

I am an active sort of bloke, always have been. I used to walk regularly, play golf and scuba dive.

SWNS

However, Keith was forced to give up golf. He also found it impossible to enjoy his regular walks in the countryside with wife Elsa, 67. Defying his wife's wishes, Keith refused to go back to the doctor amid fears he would need a knee replacement.

Mrs Young was desperate to help her husband so she did a lot of research and came across a company selling copper insoles. She bought him a pair and he inserted them in his shoes.

Within a week, he was more mobile, and was soon fit enough to join his wife on an occasional walk to the shops.

Five weeks later he started to accompany Mrs Young on walks in the country with the help of a walking stick.

Now, he is nearly back to full fitness and is looking forward to getting his golf handicap down.

He is now also able to walk briskly without pain. He said: My pain has gone. I am no longer depressed and have cut right back on the pain killers.

After being bedridden for six weeks because of the pain I was very depressed.

I felt like I didn't have much to live for but now I can honestly say the Copper Heelers have been a life saver.

Getty

1 of 12

The apparent healing powers of copper were first pioneered by the ancient Greeks who used copper bracelets to ease aches and pains.

Copper Heelers are said to contain 14 times more copper than a copper bracelet.

Copper is an essential mineral in the body and is thought to keep blood vessels, the immune system and bones healthy.

SWNS

Link:
Arthritis sufferer facing a double knee op is now pain free thanks to COPPER INSOLES - Express.co.uk

Home Anti-Aging Arthritis Rheumatoid arthritis and kidneys: Protecting your kidneys from RA

Rheumatoid arthritis patients are at an increased risk for chronic kidney disease. Researchers at the Mayo Clinic have found that rheumatoid arthritis (RA) patients have a higher risk of chronic kidney disease (CKD) along with an increase in inflammation within the first year of diagnosis, corticosteroid usage, hypertension, and obesity. The researchers recommend that rheumatoid arthritis patients be tested periodically for signs of kidney problems. Patients should also work to manage blood pressure by avoiding high-salt diets and scaling back on medications that can harm the kidneys.

The study looked at 813 Mayo Clinic patients with rheumatoid arthritis and 813 patients without the condition. Over the course of 20 years, rheumatoid arthritis patients had a one in four chance of developing chronic kidney disease, in comparison to the general public who had a one in five chance.

Senior author Dr. Eric Matteson said, That might not seem like a lot, but in fact thats quite a big difference, and it has important implications for the course of rheumatoid arthritis and for the management of the disease.

Heart disease was also found to be common in rheumatoid arthritis patients with chronic kidney disease. Risk factors in rheumatoid arthritis patients for developing chronic kidney disease include corticosteroid use, severe inflammation, obesity, hypertension, and abnormally high cholesterol.

Dr. Matteson noted that there are currently no treatment guidelines for chronic kidney disease in rheumatoid arthritis, but he warns that doctors should be mindful of the medications they put RA patients on to reduce their risk of CKD. Furthermore, RA patients should undergo routine blood work and urine analysis to monitor kidney function. Kidney disease in patients with rheumatoid arthritis can be detected very simply, and the techniques are the same as are used in the general population, Dr. Matteson added.

To further reduce their risk of CKD, the patients should be watchful of their blood pressure and reduce their use of medications that can be toxic to the kidneys.

Inflammation is the key component in the impact rheumatoid arthritis has on the kidneys. Normally, inflammation is a mechanism that the body utilizes to protect and heal the body, but chronic inflammation does far more harm than good, causing stress and destroying cells and tissue.

Other factors that contribute to a higher risk of chronic kidney disease in rheumatoid arthritis include obesity, hypertension, a corticosteroid medication, high cholesterol, and a high-salt diet.

Many of the risk factors for CKD in RA are modifiable, so its important that RA patients partake in the appropriate lifestyle changes in order to reduce their risk of chronic kidney disease.

The symptoms of kidney disease may be similar to those of RA and include fatigue, decreased appetite, itchy or darkened skin, muscle cramps, eye puffiness, shortness of breath, swollen feet and ankles, difficulty concentrating, trouble sleeping, and increased urination.

While there are no set standards for how often doctors should test patients with RA for kidney disease, it is likely your physician will begin testing you more often after being diagnosed with rheumatoid arthritis. Your risk for kidney disease also increases if you have diabetes, a family history of kidney disease, heart disease, high blood pressure and/or high cholesterol, so your doctor may test you more frequently if you have one or more of these conditions.

An RA diagnosis does not necessarily mean that you will definitely develop kidney disease. In fact, there are ways to protect your kidneys that include exercising regularly, eating a balanced, healthy diet with plenty of fresh produce, limiting your sodium intake, monitoring and controlling your cholesterol levels, and staying hydrated. Regular testing and checkups with your doctor can also help to keep your kidneys healthy and prevent your condition from worsening.

http://www.arthritis.org/living-with-arthritis/comorbidities/kidney-disease/rheumatoid-arthritis-and-your-kidneys.php

The rest is here:
Rheumatoid arthritis and kidneys: Protecting your kidneys from RA - Bel Marra Health

February 25 at 10:00 AM

A Web-based program of exercise and coping skills training improves both function and pain in arthritic knees, a new study suggests.

This kind of online therapy can greatly improve access to effective, nonsurgical and non-drug relief for people with osteoarthritis of the knee, researchers say.

Osteoarthritis is a leading cause of chronic knee pain and disability globally, lead author Kim Bennell, a researcher and physiotherapist at the University of Melbourne in Australia, said.

It has a significant individual, societal and economic burden and on an individual level knee osteoarthritis causes loss of function, reduced quality of life, and psychological distress, Bennell said by email.

Exercise is known as the gold standard of conservative management for knee osteoarthritis, she added. Psychological treatments, in particular, pain coping skills training that teaches people strategies to manage and cope with their painful symptoms, have also been identified as important and effective, Bennell said.

Sadly, such effective treatments are highly underutilized in the management of osteoarthritis. One reason for this relates to the challenges of accessing a specialist who delivers these services, particularly for people living in rural areas where services may be limited or non-existent or due to the mobility issues that are experienced by people suffering chronic knee pain, she said.

For the study, published in the Annals of Internal Medicine, Bennell and her colleagues enrolled 148 men and women over age 50 who had Internet access and had knee pain on most days of the week over the previous three months.

Participants were randomly assigned to a treatment group or a control group, both of which received Web-based educational material about exercise and pain management for arthritis.

The treatment group also got access to an online program called PainCOACH and were asked to complete one 35- to 45-minute module each week over the course of eight weeks and to practice the pain-coping skills they learned daily. The interactive program included training in relaxation, problem solving, using pleasant imagery and changing negative thoughts to cope with pain.

In addition, the treatment group had seven Skype sessions with a physical therapist, each lasting 30 or 45 minutes, over 12 weeks. After evaluating each patient, the therapist taught them exercises for lower-leg strengthening and prescribed a regimen to do three times a week.

At the beginning of the study, then three and nine months later, participants completed multiple questionnaires scoring their pain levels and functioning.

At the three-month mark, those who got the online coping skills and exercise training had significantly lower scores for pain, functioning and distress than when they started and compared with the people in the control group. This difference between the groups remained at nine months, though the gap closed somewhat.

The important takeaway message from these findings is that an Internet-delivered intervention that adopts a holistic approach to the management of chronic knee pain and knee osteoarthritis, using freely available computer software, is effective and well received by its users, Bennell said.

These results are encouraging and show that telemedicine is clearly ready for prime time, writes Lisa Mandl, a rheumatologist at the Hospital for Special Surgery in New York, in an accompanying editorial.

The real added benefit here is that patients do not have to come in for an appointment. They can access high-quality exercise and coping skills therapy, that is particularly tailored to them, at a place and time which is convenient, Mandl said by email.

Patients may also feel more comfortable asking questions of their therapist when they are asking them from the comfort and privacy of their own home, she added.

They may also be more motivated to follow the programs, knowing that they will receive a personalized follow-up call at home, and cannot avoid talking to the therapist by missing [an] appointment, Mandl said.

Mandl said she thinks this type of intervention would apply to most people, especially patients who live in rural areas or places without easy access to therapists. The fact that the therapist could be located anywhere is especially helpful for patients who may not speak English, she noted.

Reuters

Go here to read the rest:
Online treatment reduces chronic knee pain from arthritis - Washington Post

Posted on Feb. 23, 2017, 6 a.m. in Stem Cell Research Immune System Stem Cell

Autologous hematopoietic stem cell transplantation halted progression of Multiple Sclerosis for 5 years in 46% of patients.

Recent research indicates that the transplant of autologous hematopoietic stem cells (AHSCT) is an excellent treatment for multiple sclerosis. It has been determined that the procedure stops disease progression for half a decade in nearly 50 percent of multiple sclerosis patients.

About the Study

The study was spearheaded by Dr. Paolo Muraro from the Imperial College London's Department of Medicine. Dr. Muraro and his colleagues revealed their findings through JAMA Neurology. These results were released on the heels of a separate study that found the success of a similar treatment in patients suffering from relapsing-remitting multiple sclerosis (RRMS). Dr. Muraro and his research team are quick to point out that additional trials are necessary to gauge the efficacy and safety of AHSCT. It is important to note that some patients perished within the first 100 days of treatment.

About AHSCT

AHSCT involves the harvesting of a patient's own stem cells. The patient is subjected to a powerful dose of chemotherapy to destroy any diseased cells. The next step is the return of harvested stem cells to the patient's blood. The goal is to restart the production of normal blood cells.

In layman's terms, AHSCT is best understood as a resetting of the body's immune system. Though it was already known that this style of treatment resets the immune system and poses certain risks, the length of its benefits was not fully understood. We now have a better picture of these benefits. AHSCT Results

The research team studied data from over two dozen treatment centers in 13 countries. They pinpointed 281 patients who suffered from multiple sclerosis and underwent AHSCT from 1995 to 2006. Exactly 78 percent of these patients had a progressive form of multiple sclerosis. The team made use of the Expanded Disability Status Scale (EDSS) to analyze patients' survival after five years of treatment as well as improvements in their multiple sclerosis symptoms. A whopping 46 percent of these patients enjoyed zero disease progression in the five years following treatment. Those with RRMS, characterized by flare-ups (inflammatory attacks) and periods of remission enjoyed the optimal outcomes.

An amazing 73 percent of these patients did not endure worsening of symptoms in the 5 years following AHSCT. Some patients also experienced minor improvements in their multiple sclerosis symptoms following AHSCT. Those with progressive multiple sclerosis enjoyed a rise in EDSS score by 0.14 in the year after treatment. Those with RRMS experienced an EDSS score increase of 0.76. Those of a younger age, minimal immunotherapies before AHSCT and a comparably lower EDSS score also displayed improved outcomes with AHSCT. Treatment Risk

The findings described above clearly show promise for the AHSCT use in individuals who suffer from multiple sclerosis. The research team would like to make it perfectly clear that some patients died in the 100 days following AHSCT. Exactly eight patients perished in this time period. It is assumed that the deaths were related to treatment. AHSCT makes use of aggressive chemotherapy that significantly weakens the immune system and spikes one's risk for infection. Since multiple sclerosis is not a disease that is immediately life-threatening, the risk of death posed by AHSCT must be weighed by all multiple sclerosis patients.

What's next Dr. Muraro is adamant that a follow-up study must be performed that includes a group of multiple sclerosis patients who have not received AHSCT. It is clear that additional studies are required to accurately gauge the efficacy and safety of AHSCT. Ideally, a massive randomized controlled trial of AHSCT will be performed in the coming months.

Continued here:
Stem Cell Therapy Halts Multiple Sclerosis - Anti Aging News

A type of treatment for multiple sclerosis that 'resets' the immune system may stop progression of the disease in nearly half of patients.

In a new study, led by Imperial College London, the treatment prevented symptoms of severe disease from worsening for five years, in 46 per cent of patients.

However, as the treatment involves aggressive chemotherapy, the researchers stress the procedure carries significant risk.

Multiple sclerosis (MS) affects around 100,000 people in the UK, and 2.3 million worldwide. The condition is caused by the immune system malfunctioning and mistakenly attacking nerves in the brain and spinal cord. This leads to a range of symptoms including fatigue, problems with arm and leg movement, vision and balance. There is no cure but certain medications can help slow progression of the disease.

The treatment in the current study, called autologous hematopoietic stem cell transplantation (AHSCT), was given to patients with advanced forms of the disease that had failed to respond to other medications.

The study, published in the journalJAMA Neurology, suggested some patients even saw a small improvement in their symptoms following the treatment. The one-off treatment aims to prevent the immune system from attacking the nerve cells. All immune system cells are made from stem cells in the bone marrow. In the treatment, a patient is given a drug that encourages stem cells to move from the bone marrow into the blood stream, and these cells are then removed from the body.

The patient then receives high-dose chemotherapy that kills any remaining immune cells. The patient's stem cells are then transfused back into their body to re-grow their immune system. Previous studies have suggested this 'resets' the immune system, and stops it from attacking the nerve cells.

However, because the treatment involves aggressive chemotherapy that inactivates the immune system for a short period of time, some patients died from infections. Out of the 281 patients who received the treatment in the study, eight died in the 100 days following the treatment. Older patients, and those with the most severe forms of the disease, were found to have a higher risk of death.

Dr Paolo Muraro, lead author of the study from the Department of Medicine at Imperial, explained that the risks must be weighed-up against the benefits: "We previously knew this treatment reboots or resets the immune system - and that it carried risks - but we didn't know how long the benefits lasted.

"In this study, which is the largest long-term follow-up study of this procedure, we've shown we can 'freeze' a patient's disease - and stop it from becoming worse, for up to five years.

However, we must take into account that the treatment carries a small risk of death, and this is a disease that is not immediately life-threatening."

Most patients with multiple sclerosis have a type of the disease that has flare-ups, known as relapses, followed by an improvement in symptoms. This is called relapsing-remitting MS.

Dr Muraro explained the number of years this treatment prevented symptoms from worsening is far greater than would be expected in untreated patients with severe forms of relapsing MS.

The study found that in patients with relapsing MS, nearly three in four (73 per cent) experienced no worsening of their symptoms five years after the treatment. Younger patients with less severe forms of the disease were more likely respond to the therapy.

However, the majority of the patients in the study had a progressive form of MS. This is a more severe form of the disease, and for which there are currently no treatments. Among these patients, one in three experienced no worsening of symptoms five years after treatment.

Some patients saw a small improvement in their symptoms, though this improvement was larger in patients with relapsing MS, compared to patients with the progressive form.

Disability in MS is assessed on a scale known as the Expanded Disability Status Scale (EDSS). In this scale, zero represents no disability, seven is wheelchair-bound, while ten is death from MS. At the beginning of the study, patients had an average EDSS score of 6.5.

Patients with relapsing MS had an average improvement in their EDSS score of 0.76, one year after the treatment. Patients with progressive MS had only a marginal improvement of 0.14.

Dr Muraro added these findings suggest larger trials of this procedure are now needed.

"These findings are very promising - but crucially we didn't have a placebo group in this study, of patients who didn't receive the treatment. We urgently need more effective treatments for this devastating condition, and so a large randomised controlled trial of this treatment should be the next step."

Dr Sorrel Bickley, Head of Biomedical Research at the MS Society, added: "This study is one of the largest to date looking at AHSCT as a treatment for MS and the findings offer some encouraging insights. It shows that AHSCT can slow or stop progression for many years, and the treatment is most effective in people with MS who have 'active inflammation' in their brain and spinal cord.

"There are more than 100,000 people with MS in the UK, it's a challenging and unpredictable condition to live with and that's why the MS Society is funding research like this to further our knowledge and find treatments for everyone.

"If anyone with MS is considering AHSCT they should speak to their neurologist as a referral is needed to access this treatment via a trial or on the NHS."

View post:
MS Treatment That 'Resets' Immune System May Halt Disease Progression for Estimated 5 Years - Drug Discovery & Development

Crain's Detroit Business

Wayne State study finds Zika virus may cause blindness Crain's Detroit Business A study released Friday by a team of Wayne State University researchers in Detroit shows that Zika virus may cause blindness. The report, led by microbiologist Ashok Kumar, found that the virus can spread and damage tissue in the eye's retinal cells ... Wayne State Vision Researchers Show Zika Virus Can Damage Retina and Cause BlindnessInfection Control Today all 2 news articles »

The rest is here:
Wayne State study finds Zika virus may cause blindness - Crain's Detroit Business

Wall Street Journal (subscription)

Nasdaq Slips as Biotechnology Shares Decline Wall Street Journal (subscription) Declines in biotechnology shares dragged down the Nasdaq Composite, pressuring an index that has soared so far this year. The Nasdaq fell 0.4% Thursday but is up more than 8% in 2017, outperforming both the Dow Jones Industrial Average and the S&P ... and more »

See the original post here:
Nasdaq Slips as Biotechnology Shares Decline - Wall Street Journal (subscription)

An in-depth computational analysis of genetic variants implicated in both schizophrenia and rheumatoid arthritis by researchers at the University of Pittsburgh points to eight genes that may explain why susceptibility to one of the disorders could place individuals at lower risk for the other, according to the results of a study published today in the journal npj Schizophrenia.

There is a wealth of genomic data on both schizophrenia and rheumatoid arthritis. Analyzing it jointly with known protein interaction information could provide invaluable clues to the relationship between the diseases and also shed light on their shared roots, said Madhavi Ganapathiraju Ph.D., associate professor of biomedical informatics at the University of Pittsburgh School of Medicine and senior author of the study.

While schizophrenia is a psychiatric disorder of unknown origin and rheumatoid arthritis is an autoimmune disease of the joints that occurs as a result of the bodys immune system attacking its own cells, both disorders are thought to be influenced by multiple genetic risk factors modified by the environment.

Several previous research studies have hinted at a potential inverse relationship in the prevalence and risk for the two disorders, so we wondered if individual genetic variants may exist that could have opposing effects on the risk of schizophrenia and rheumatoid arthritis, said co-senior author Vishwajit Nimgaonkar M.D., Ph.D., professor of psychiatry at Pitts School of Medicine and human genetics at Pitts Graduate School of Public Health.

The researchers first analyzed two large databases of genetic variants significantly associated with either schizophrenia or rheumatoid arthritis. They identified 18 unique variants, also known as single nucleotide polymorphisms (SNPs) that were located in the HLA region of the genome that harbors genes associated with immune function. The variants appeared to confer different risk for schizophrenia or rheumatoid arthritis. As the SNPs were located near eight known genes in this region, the authors suggested those genes might lead to dysfunction in both schizophrenia and rheumatoid arthritis. Proteins encoded by two of these eight genes, HLA-B and HLA-C, are present in both brain and immune cells.

Analysis of proteins that interact with these eight genes using a computational model developed last year by Ganapathirajus team called High-Precision Protein Interaction Prediction found more than 25 signaling pathways with proteins common to both rheumatoid arthritis and schizophrenia signaling. Moreover, several of these pathways were associated with immune system function and inflammation.

The findings are encouraging because they support associations of the HLA gene region and immune function with schizophrenia and rheumatoid arthritis that were known over four decades ago, said Ganapathiraju.

Increasing evidence also suggests that a dysfunctional immune system could play a role in the development of schizophrenia.

We believe that the research community studying these two disorders will find our results extremely helpful, Nimgaonkar said.

The authors note that the study only focused on SNPs in known gene regions, and other mechanisms apart from the ones they described may also contribute to the diseases. However, the study has significantly narrowed the list of potential genes for examining the schizophrenia/rheumatoid arthritis relationship. Studying the functional relevance of the gene candidates in cells and tissues will provide insights into the two disorders, according to the researchers.

Other study authors included Tulsi A. Malavia, Srilakshmi Chaparala, Joel Wood, Kodavalli Chowdari, Ph.D., Konasale M. Prasad, M.D., and Lora McClain, Ph.D., all of Pitt; and Anil G. Jegga, D.V.M., of Cincinnati Childrens Hospital.

The research was funded by National Institutes of Health grants MH93480, MH093246, MH084053 and MH094564.

Continue reading here:
Clues to relationship between schizophrenia and rheumatoid ... - ScienceBlog.com (blog)

By Alan Mozes

HealthDay Reporter

FRIDAY, Feb. 24, 2017 (HealthDay News) -- Depression in people with the chronic inflammatory skin disease psoriasis increases the risk of getting the joint condition known as psoriatic arthritis by about 37 percent, new research indicates.

The finding raises concerns because depression is not uncommon in people with psoriasis, according to the authors of the study in the Feb. 22 issue of the Journal of Investigative Dermatology.

"For many years, the rheumatology and dermatology communities have been trying to understand which patients with psoriasis go on to develop psoriatic arthritis, and how we might detect it earlier in the disease course," senior investigator Dr. Cheryl Barnabe said in a journal news release. She is from the McCaig Institute for Bone and Joint Health and the O'Brien Institute for Public Health at the University of Calgary in Alberta.

While the study found a connection between depression and the development of psoriatic arthritis, it wasn't designed to prove a cause-and-effect relationship.

Psoriasis is a condition characterized by red, itchy and scaly skin patches. These patches can sometimes be disfiguring. Psoriatic arthritis generally occurs in people with psoriasis, though it can occur on its own, according to the American College of Rheumatology. The condition causes joint pain and swelling, typically in the large joints and fingers and toes. It can cause joint damage, too.

The study authors noted that prior work has linked having a major depressive disorder with a high risk for systemic inflammation. This could explain why depression would bump up the risk for psoriatic arthritis.

To explore the link, the investigators analyzed information on more than 70,000 psoriasis patients in the United Kingdom that had been collected by a primary care database.

Patients were tracked for upwards of 25 years.

The researchers adjusted the data to account for other factors, such as age and drinking habits. Ultimately, they determined that people who had been depressed faced a much higher risk for psoriatic arthritis than those who hadn't been depressed.

"There is a tendency to think of depression as a purely 'psychological' or 'emotional' issue, but it also has physical effects and changes in inflammatory and immune markers have been reported in depressed people," said Dr. Scott Patten, from the O'Brien Institute.

"Depression may be a risk factor for a variety of chronic conditions, and this research is an example of how big data approaches can identify these associations," he said.

WebMD News from HealthDay

SOURCE: Journal of Investigative Dermatology, news release, Feb. 22, 2017

Follow this link:
Can Depression Up Odds for Psoriatic Arthritis? - WebMD

Are rheumatoid arthritis and juvenile rheumatoid arthritis simply the same illness diagnosed at different life stages?

The answer isnt as clear-cut as rheumatologists, patients, and researchers might think.

Juvenile arthritis (JA) also known as juvenile rheumatoid arthritis, pediatric arthritis, and juvenile idiopathic arthritis is the sixth most common childhood disease, but its often misdiagnosed or undiagnosed.

One reason for this is due to the misconception that arthritis only affects an older portion of the population. Another problem is the national shortage of pediatric rheumatology specialists.

There is also the issue that the umbrella term juvenile arthritis actually encompasses several unique childhood rheumatologic diseases.

Furthering the confusion surrounding JA is whether or not it is actually a separate and distinct disease from rheumatoid arthritis (RA) or if it is simply early-onset or pediatric RA, meaning, the same disease diagnosed at a younger age.

Read more: Get the facts on juvenile rheumatoid arthritis

A new study may provide some clarity and guidance about the JA vs. RA conundrum.

In it, researchers say a genetic link has been found between JA and RA.

It was already known among pediatric rheumatologists that some kinds of juvenile idiopathic arthritis have adult counterparts.

Past research also showed that there was a genetic link between juvenile idiopathic arthritis and a chromosomal abnormality, but the sample sizes were weak.

In the new study, genetic associations within juvenile idiopathic arthritis categories were compared with adult inflammatory arthritis.

According to a press release about the study, A major finding was that there were within-category associations for juvenile idiopathic arthritis. Specifically, the study team found that rheumatoid factor (RF)-negative polyarticular and oligoarticular were genetically similar. Comparisons with adult disease showed a shared association of human leucocyte antigen-DRB1 amino acid at position 13 for both child-onset and adult diseases. Moreover, researchers found that associations from a combined dataset for juvenile idiopathic arthritis types oligoarthritis and RF-negative polyarthritis were the same associations seen in adult seronegative rheumatoid arthritis.

The authors of the study added, The results of this study have important implications for understanding disease pathogenesis, aetiology, and potential future therapeutic strategies for JIA categories, but they note that more genetic research will need to be done into JA.

Read more: Antibiotics may play a role in juvenile arthritis

But it is possible that these findings may eventually provide better, more targeted novel treatment therapies for JA and RA patients alike.

Or at least may open up treatment options to JA patients who have been limited by the juvenile component of their diagnosis.

The report states that, There are no specific therapeutic strategies for seronegative RA at this time, but given the rarity of this subphenotype of RA and the JIA categories individually, this study suggests that further comparisons of genetic studies for these diseases could help identify novel pathways and targets for therapy for both adult-onset and childhood-onset forms of inflammatory arthritis.

According to an article in The Hospital for Special Surgery, For more than 95 percent of the children with arthritis, we don't need new drugs or miraculous inventions, we just need proper application of the resources we already have.

But a missed JA diagnosis or delayed treatment can be catastrophic, as evidenced by recent reports out of the United Kingdom.

The same can be said for adult-onset RA.

Whether they share these genetic commonalities or not, both diseases are among the most disabling in their respective age demographic and both can affect more than bones and joints.

Continue reading here:
Adult RA and Juvenile Arthritis May Be More Similar Than Once ... - Healthline

A few years ago, Jennifer Nocito went Toronto with her daughter to their first Power of Movement event.

It is an annual fundraising yoga event benefiting the Arthritis Research Foundation.

There is arthritis in my family both my mother and my grandmother live with it and have seen the effects, so I wanted the opportunity to bring an awareness campaign up to Collingwood, she said.

Last year, she led her first event in Collingwood and had a great response. This year, she would like to see even more people take the opportunity to see how gentle yoga can improve mobility and lives.

I had a great turnout. Some people participated and others just came to donate money, said Nocito. Some even stayed to talk to me about their arthritis, ... Its not only about arthritis but also raising funds for research into related autoimmune diseases.

Research has shown yoga can be beneficial for those living with arthritis because it involves a lot of stretching and strengthening that have been found to ease the pain of inflamed joints.

Theres a meditative element, Nocito pointed out, that helps to calm the mind and relieve some of the stress associated with the condition.

The Arthritis Research Foundation suggests by 2021, 20% of Canadians will have arthritis or one of its 100 related autoimmune disorders including lupus and osteoarthritis.

There are all different kinds of yoga, but this one is definitely designed to encourage people to come to try it for the first time, said Nocito. Even people who have been doing yoga for years will benefit from it.

Nocito, a registered massage therapist and owner of Yoga First and Spa, knows some of the successes she has experienced with some of her clients.

This isnt about body image; this is about getting yourself moving again, Nocito added.

This event on March 5 at the Central Park Arena in Collingwood is open to all ages. And age shouldnt be a deterrent, Nocito said.

My daughter is 14 and does yoga and Pilates every day, she said. And in my classes at Blue Shore, I have one woman who is 79.

The event, Power of Movement, starts with registration at 12:30 p.m., with the class beginning at 1 p.m. The fee is by donation and all proceeds go to the Arthritis Research Foundation.

jmcveigh@postmedia.com

See the original post here:
Event aids Arthritis research - Collingwood Enterprise Bulletin

Keighley MP Kris Hopkins at the Arthritis Research UK reception in the House of Commons. Photo by Fergus Burnett.

THE MP for Keighley has supported a campaign to help people who have arthritis return to or stay in employment.

Kris Hopkins attended a reception in Westminster to find out more about arthritis and about Arthritis Research UKs Work Matters to Me initiative.

The charity has argued that what it calls the "Arthritis employment gap" is considerable, with the employment rate amongst people with arthritis and musculoskeletal conditions 20 per cent lower than amongst people with no condition or disability.

Mr Hopkins said: The ability to work is something that can be taken for granted but, for people living with arthritis, it can often be a challenge.

Arthritis Research UK advised me that, across Bradford District, 84,273 people suffer from back pain, which is 16.06 per cent of the resident population.

Nationally, back pain costs the economy an estimated 10 billion each year, a figure which jumps to 25 billion when you include osteoarthritis and rheumatoid arthritis.

I commend Arthritis Research UK on their campaign, and for placing the vital important issues it raises on the agenda.

Original post:
Keighley's MP briefed on campaign to help people with arthritis remain in employment - Keighley News

Call me a creature of habit, or just plain boring, but Ive been wearing my hair long, blonde, straight, and side-parted for more than 15 years. The only thing thats really changed is how much of it I have left. Whether the result of bleach, blowouts, stress, hormones, genetics, or all of the above, Ive been shedding like a cheap angora sweater since the age of 30. And, to make matters worse, the hair I do have is fine, fragile, and flyaway.

It wasnt always so. Flipping through old photo albums, I found evidence not only of my natural color (a long-forgotten brown) but also of the graphic, blunt bob I sported in my early 20s. I had oodles of hair back then and would smooth it to my head with pomade and push it behind my earsmuch like Guido Palau did on some of the models in Pradas spring runway show, I noted smugly.

Efforts in the ensuing years to save my ever-sparser strands have been all but futile. You name it, Ive tried it: platelet-rich plasma (PRP), treatments in which your own blood is spun down to platelets and injected into your scalp; mesotherapy (painful vitamin shots, also in the scalp); oral supplements; acupuncture; massage; herbal remedies; and high-tech hair products. Ive even resorted to wearing a silly-looking helmet that bathed my head in low-level laser light and was said to stimulate failing follicles. At this point, I would soak my mane in mares milk under the glow of a waxing supermoon if I thought it would help.

Since hair regeneration is one of the cosmetics-research worlds holiest grails (read: potential multibillion-dollar industry), Ive always hoped that a bona fide breakthrough was around the corner, and prayed it would arrive well ahead of my dotage. As it turns out, it might actually be a five-hour flight from New Yorkand around $10,000away.

It was the celebrity hairstylist Sally Hershberger who whispered the name Roberta F. Shapiro into my ear. You have to call her, she said. She is on to something, and it could be big. Shapiro, a well-respected Manhattan pain-management specialist, treats mostly chronic and acute musculoskeletal and myofascial conditions, like disc disease and degeneration, pinched nerves, meniscal tears, and postLyme disease pain syndromes. Her patient list reads like a whos who of the citys power (and pain-afflicted) elite, and her practice is so busy, she could barely find time to speak with me. According to Shapiro, a possible cure for hair loss was never on her agenda.

But thats exactly what she thinks she may have stumbled upon in the course of her work with stem cell therapy. About eight years ago, she started noticing a commonality among many of her patientsevidence of autoimmune disease with inflammatory components. Frustrated that she was merely palliating their discomfort and not addressing the underlying problems, Shapiro began to look beyond traditional treatments and drug protocols to the potential healing and regenerative benefits of stem cellsspecifically, umbilical cordderived mesenchymal stem cells, which, despite being different from the controversial embryonic stem cells, are used in the U.S. only for research purposes. After extensive vetting, she began bringing patients to the Stem Cell Institute, in Panama City, Panama, which she considers the most sophisticated, safe, and aboveboard facility of its kind. Its not a spa, or a feel-good, instant-fix kind of place, nor is it one of those bogus medical-tourism spots, she says. Lori Kanter Tritsch, a 55-year-old New York architect (and the longtime partner of Este Lauder Executive Chairman William Lauder) is a believer. She accompanied Shapiro to Panama for relief from what had become debilitating neck pain caused by disc bulges and stenosis from arthritis, and agreed to participate in this story only because she believes in the importance of a wider conversation about stem cells. If it works for hair rejuvenation, or other cosmetic purposes, great, but that was not at all my primary goal in having the treatment, Kanter Tritsch said.

While at the Stem Cell Institute, Kanter Tritsch had around 100 million stem cells administered intravenously (a five-minute process) and six intramuscular injections of umbilical cord stem cellderived growth factor (not to be confused with growth hormone, which has been linked to cancer). In the next three months, she experienced increased mobility in her neck, was able to walk better, and could sleep through the night. She also lost a substantial amount of weight (possibly due to the anti-inflammatory effect of the stem cells), and her skin looked great. Not to mention, her previously thinning hair nearly doubled in volume.

As Shapiro explains it, the process of hair loss is twofold. The first factor is decreased blood supply to hair follicles, or ischemia, which causes a slow decrease in their function. This can come from aging, genetics, or autoimmune disease. The second is inflammation. One of the reasons I think mesenchymal stem cells are working to regenerate hair is that stem cell infiltration causes angiogenesis, which is a fancy name for regrowing blood vessels, or in this case, revascularizing the hair follicles, Shapiro notes. Beyond that, she says, the cells have a very strong anti-inflammatory effect.

For clinical studies shes conducting in Panama, Shapiro will employ her proprietary technique of microfracturing, or injecting the stem cells directly into the scalp. She thinks this unique delivery method will set her procedure apart. But, she cautions, this is a growing science, and we are only at the very beginning. PRP is like bathwater compared with amniotic- or placenta-derived growth factor, or better yet, umbilical cordderived stem cells.

Realizing that not everyone has the money or inclination to fly to Panama for a treatment that might not live up to their expectations, Hershberger and Shapiro are in the process of developing Platinum Clinical, a line of hair products containing growth factor harvested from amniotic fluid and placenta. (Shapiro stresses that these are donated remnants of a live birth that would otherwise be discarded.) The products will be available later this year at Hershbergers salons.

With follicular salvation potentially within reach, I wondered if it might be time to revisit the blunt bob of my youth. I call Palau, and inquire about that sleek 1920s do he created for Prada. Fine hair can actually work better for a style like this, he says. In fact, designers often prefer models with fine hair, so the hairstyle doesnt overpower the clothing. Then he confides, Sometimes, if a girl has too much hair, we secretly braid it away. Say what? I know, its the exact opposite of what women want in the real world. But models are starting to realize that fine hair can be an asset. Look, at some point you have to embrace what you have and work with it. Wise words, perhaps, and proof that, like pretty much everything else, thick hair is wasted on the young.

From the Minimalist to the Bold, the 5 Best Hair Trends of New York Fashion Week

Watch W's most popular videos here:

Go here to read the rest:
Thanks to Stem Cell Therapy, Thinning Hair May Be a Thing of the ... - W Magazine

CHICAGO. (Ivanhoe Newswire) -- Osteoarthritis is the most common form of arthritis in the U.S., affecting nearly 27 million adults. It is currently an incurable disease in which the joints deteriorate. Now, a therapy that has been used in eye surgery and to heal the skin of burn victims is being used for the first time in knees. This new form of treatment involves stem cells from amniotic fluid.

As a professional photographer, climbing up step ladders and walking down stairs are part of the daily grind for 65-year-old Linda Schwartz.

"There's constant activity; you're moving the whole time, really," Schwartz told Ivanhoe.

But the pain of osteoarthritis in both of her knees was making all that activity a little harder.

Schwartz detailed, "I tried cortisone shots. I had something called Euflexxa. I was sent to physical therapy twice. I mean, I did try acupuncture in my knees. But it didn't really seem to make a difference."

Adam Yanke, M.D., an orthopedic surgeon at Rush University Medical Center in Chicago, explained, "It's like the rubber on the tire. So as you start to lose the rubber in your tire and the rim hits the road, that's what happens when you have bone on bone arthritis and you've lost all the cartilage in your knee."

Dr. Yanke enrolled Schwartz in an experimental new therapy that involved injecting amniotic fluid that contained stem cells donated by healthy mothers into the knees of osteoarthritis patients.

"Between the two of those they're a potent anti-inflammatory and they also have growth factors that help promote healing or healthy growth of tissue," said Dr. Yanke.

It was by far the most effective pain treatment that Schwartz has tried. Unlike cortisone shots, there are no side effects. The pain relief has so far lasted up to a year.

"It was a very gradual feeling of it's a little bit better, it's a little bit better, and then realizing, wow, it's really pretty good," said Schwartz.

The one drawback is this therapy is not for patients whose arthritis is so bad it requires knee replacement surgery. Even though it's still in the experimental stage, Dr. Yanke offers the stem cell treatment to his patients. But at a cost of $2,200 a shot, it is not yet covered by insurance.

Contributors to this news report include: Cyndy McGrath, Supervising Producer; Jessica Sanchez, Field Producer; Milvionne Chery, Assistant Producer; Roque Correa, Editor.

MEDICAL BREAKTHROUGHS

RESEARCH SUMMARY

TOPIC: Stem Cell Therapy for Osteoarthritis

REPORT: MB #4213

BACKGROUND: Osteoarthritis, also known as degenerative joint disease or degenerative arthritis, is the most chronic condition in the joints, affecting 27 million Americans. This disease is an incurable one in which the tissue and bone in the joints deteriorate. Because the cartilage is a cushion between the bones, when this is lost a person can experience considerable pain, swelling and problems when moving the joint. This condition can affect people of any age, but it is more common in people over the age of 65. Some common risk factors include:

* Age

* Obesity

* Previous joint injury

* Overuse of the joint

* Weak thigh muscles

* Genetics

(Source: http://www.arthritis.org/about-arthritis/types/osteoarthritis/what-is-osteoarthritis.php)

TREATMENTS: Although there is no cure for osteoarthritis, there are several treatments that exist to treat it. Each treatment depends on the patient and the severity of the disease, but all focus on managing pain, stiffness and swelling; as well as joint mobility and flexibility. Some of these treatments are:

* Medications, like analgesics, nonsteroidal anti-inflammatory drugs, pills, cream and lotions

* Physical and occupational therapies

* Surgery

* Natural and alternative therapies like nutritional supplements, acupuncture, massages, physical activities, and weight management

(Source: http://www.arthritis.org/about-arthritis/types/osteoarthritis/treatment.php)

STEM CELL THERAPY: Stem cell therapy consists of a membrane product that also has amniotic fluid in it. They are usually used in eye surgery and to heal the skin of burned victims but now they're being used to treat osteoarthritis in an experimental therapy. The main goal of the trial is to demonstrate this is an adequate therapy for relieving inflammation in the joints. The therapy involves injecting amniotic fluid that contains stem cells donated by healthy mother into the knees of patients. Dr. Adam Yanke says it's too soon to tell if the stem cell therapy will actually help with growing back healthy tissue in order to avoid surgery, or if it will simply delay the process. Furthermore, the therapy can't be given to patients suffering from chronic arthritis and are in need of knee replacement surgery. Nevertheless, the treatment helps with pain relief, movement and there are no reported side effects.

(Source: Adam Yanke)

FOR MORE INFORMATION ON THIS REPORT, PLEASE CONTACT:

Deb Song

Media Relations

Deb_song@rush.edu

If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas at mthomas@ivanhoe.com

The rest is here:
HealthWatch: Stem Cell Therapy for Osteoarthritis - WeAreGreenBay.com

Medical tourism is alive and well in places all over the world. Thailand, Mexico and Colombia are just some of the destinations where people travel in order to get affordable health care. While finances are the main concern of medical tourists, another reason to make the trip is for services that arent provided in a travelers local city or country. Stem Cells are still a controversial topic in many countries and while research is being conducted, people who might benefit from the treatments may not be able to locate a qualified provider. Why travel so far just for stem cell treatment? Well.

They May Be Able To Cure Cancer

Cancer is one of the most prevalent diseases out there without a cure. With so many people falling ill to this disease, the need for a cure is more important than ever. Stem cell studies are being conducted and researchers have found that stem cell therapy can be used to add healthy cells into the system to suppress the disease while stimulating the growth of new and healthy marrow. Hodgkins Lymphoma, breast cancer and ovarian cancer may benefit the most from these treatments.

They Could Be Capable of Treating Blood Disease

According to NSI Stem Cell, stem cell therapy may be able to provide the body with regenerative and healthy blood cells to combat blood disease. With healthy blood cells in the system, diseases like Sickle Cell Anemia, Fanconi Anemia and Thalassemia could be effectively treated.

They Have The Ability To Treat Injuries and Wounds

By increasing blood vessels and improving blood supply, stem cells could treat both chronic and acute wounds, especially in older patients who dont heal as quickly. Specifically, stem cell therapy could help treat surface wounds, limb gangrene and the replacement of jawbone.

Research Is Being Done On a Huge Variety of Treatment Potential

Stem cells are constantly undergoing research to uncover their potential when it comes to medical treatments. Some of the treatments being explored include:

-Auto-immune Disease: These cells may be able to repair and regenerate damaged tissue for people suffering from Rheumatoid Arthritis, Buergers Disease, and Systemic Lupus.

-Neurodegeneration: They could help with diseases such as MS and Parkinsons.

-Brain & Spinal Cord Injuries: The cells could reduce inflammation and help to form healthy, new tissue.

-Heart Conditions: Stem cells are being utilized to create new blood vessels, reverse tissue loss and regenerate heart muscle tissue.

-Tooth & Hair Replacement: They can help grow thinning hair and replace missing teeth.

-Vision Loss: Retinal cells are being injected into the eyes to improve vision.

-Pancreatic Cells: Healthy Beta Cells in the pancreas are being produced by stem cells. These therapies would help diabetic patients and allow them to decrease their dependence on insulin.

-Orthopedics: Stem cells can be utilized to treat arthritis and ligament/tendon injuries.

-HIV/Aids: Researchers are looking into using stem cells to produce an immune system that is resistant to disease.

The Cost of Treatment Will Vary But Can Be Affordable

While it may seem that the cost of stem cell therapy would be extremely high, the truth is that it varies. It all depends on the treatment necessary but the range could be from $1,000 to $100,000. In the future, insurance companies may even cover costs for some treatments.

Stem Cells Come From Multiple Sources

Stem cells come from a whole variety of places including bone marrow, adipose tissue, blood and umbilical cords. In the case of extraction from adipose tissue, they can be harvested and then put back in a patient after only a couple of days. All of the procedures to acquire the stem cells can be done with willing participants and donors.

Originally posted here:
Why People Are Traveling For Stem Cell Treatment - Huffington Post

Back to Browse Journals Neuropsychiatric Disease and Treatment Volume 13

Gautam Rao, Sherwin Mashkouri, David Aum, Paul Marcet, Cesar V Borlongan

Department of Neurosurgery and Brain Repair, Center of Excellence for Aging and Brain Repair, University of South Florida Morsani College of Medicine, Tampa, FL, USA

Abstract: Epilepsy is a debilitating disease that impacts millions of people worldwide. While unprovoked seizures characterize its cardinal symptom, an important aspect of epilepsy that remains to be addressed is the neuropsychiatric component. It has been documented for millennia in paintings and literature that those with epilepsy can suffer from bouts of aggression, depression, and other psychiatric ailments. Current treatments for epilepsy include the use of antiepileptic drugs and surgical resection. Antiepileptic drugs reduce the overall firing of the brain to mitigate the rate of seizure occurrence. Surgery aims to remove a portion of the brain that is suspected to be the source of aberrant firing that leads to seizures. Both options treat the seizure-generating neurological aspect of epilepsy, but fail to directly address the neuropsychiatric components. A promising new treatment for epilepsy is the use of stem cells to treat both the biological and psychiatric components. Stem cell therapy has been shown efficacious in treating experimental models of neurological disorders, including Parkinsons disease, and neuropsychiatric diseases, such as depression. Additional research is necessary to see if stem cells can treat both neurological and neuropsychiatric aspects of epilepsy. Currently, there is no animal model that recapitulates all the clinical hallmarks of epilepsy. This could be due to difficulty in characterizing the neuropsychiatric component of the disease. In advancing stem cell therapy for treating epilepsy, experimental testing of the safety and efficacy of allogeneic and autologous transplantation will require the optimization of cell dosage, delivery, and timing of transplantation in a clinically relevant model of epilepsy with both neurological and neuropsychiatric symptoms of the disease as the primary outcome measures.

Keywords: epilepsy, neuropsychiatric, stem cells, autologous

This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution - Non Commercial (unported, v3.0) License. By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms.

Excerpt from:
Contemplating stem cell therapy for epilepsy-induced ... - Dove Medical Press

SYRACUSE, N.Y.

It is degenerative eye disease that could eventually leave Stephanie Harmon blind.

Retinitis pigmentosa has forced the Salina mother to quit her job as she tries to raise two teenagers.

"To lose your vision. It is one of the scariest things. But I had 40 plus years of it, so I was blessed with that. I could have had nothing my whole life," Harmon said.

Four years ago, Harmon was diagnosed with retinitis pigmentosa, or RP, a disease where part of the retina slowly deteriorates.

It is fairly rare, affecting about one out of 4,000 people.

Imagine slowly losing your peripheral vision, your eyesight closing in . That is what Harmon said retinitis pigmentosa is like. She said right now for here, it is like each eye is looking through a toilet paper tube.

"It's just the little things, learning braille because it's way easier now while I still have some of my vision left than to do it while have nothing. It's little things like that but once you start accepting those things then you're really accepting that you have this," Harmon said.

Stephanie does not know if she will lose all her sight, but she is taking in all she can while she still has time.

There are things on top of my list that I want to do. I jumped out of plane last summer. Something that I'll be able to take with me forever and have that vision in my head," Harmon said.

View post:
Salina mother slowly losing eyesight wants to get the word out about rare disorder - CNYcentral.com

PIKEVILLE SOAR is set to host an obesity and diabetes roundtable at Union College in Barbourville on March 16. The goal of the roundtable will be to identify specific strategies that can be implemented throughout the region through innovation, collaboration and the support of SOAR.network.

This Roundtable event is about next steps, Dr. William Hacker, Chair of the SOAR Community Health and Wellness Advisory Council, said. We refuse to get caught up in the continual loop of negative data and poor outlooks. We know the rates, we know that there is work to be done in our communities and we are bringing together the people, the organizations and the leaders that are ready to work together to reduce obesity and diabetes in our region.

The roundtable will feature bright spot presentations from successful programs and attendees will have the opportunity to participate in one of two separate roundtable discussions: Education, Prevention, and Innovation and Disease Detection and Management. Each discussion will be led by a panel of experts.

Our region continues to struggle with the effects of obesity and diabetes in our daily lives, in our families and in building and maintaining a strong, healthy workforce, Jared Arnett, Executive Director of SOAR, said. We are ready to turn the conversation to identifying strategies that communities can implement to reduce the impact of these conditions and meet the goals of the SOAR Regional Blueprint. We are excited to bring together those with an interest and a desire to be a part of the solution and provide the link for continued conversation and action through the SOAR.Network.

The roundtable will be held at Union College through collaboration with Union College and the Appalachian Regional Commission. The roundtable will take place from 10am-2pm with lunch sponsored by WellCare of Kentucky. Informational booths and posters with evidence based best practice recommendations will be displayed. Registration is free but space is limited. All are encouraged to attend.

All interested in attending can register at http://www.soar-ky.org/healthroundtable.

.

Go here to see the original:
SOAR to host obesity and diabetes roundtable - The Floyd County Times

Diabetes Psychosocial Care Addressed by ADA in First Published Recommendations Endocrinology Advisor The American Diabetes Association (ADA) has released a position statement focused on aspects of psychosocial care in type 1 and type 2 diabetes, published in Diabetes Care.1 Based on current diabetes research and recommendations from mental and ...

Follow this link:
Diabetes Psychosocial Care Addressed by ADA in First Published Recommendations - Endocrinology Advisor

A girl of eight whose rare brain disorder is likely to lead to her death when she is in her teens is taking part in pioneering stem cell research in a bid to save others with same condition.

Lily Harrisss skin cells will first be turned into stem cells and then into brain cells by researchers at University College London as they seek treatments or a cure.

About 100 to 200 cases of BPAN beta-propeller protein-associated neurodegeneration are known worldwide, although this is believed to be an underestimate.

Children often suffer delayed development, sleep problems, epilepsy and lack of speech and their symptoms can be mistaken for other conditions.

Lily, from Luton, was diagnosed when she was five. She has very limited communication skills and uses a wheelchair. She wakes four or five times a night and needs drugs to control seizures.

However, she loves swimming and her father Simon said she has recently began singing on car journeys.

Shes laughed and giggled her way through everything, and shes been through a lot, he said.

Shes a beautiful little girl who can be quite naughty sometimes. Were giving her the best time we can while shes here. We have a beautiful little girl and its just so cruel.

Young people with BPAN develop abnormal muscle tone, symptoms of Parkinsons disease and dementia.

Mr Harriss and his wife Samantha, who work for an airline, know that as Lilys condition progresses she may have difficulty swallowing and require pain management.

Mr Harriss said: Lily can point to things she wants, she uses a little sign language and she can say a few words, like mummy, daddy, hello and goodbye.

Medical research like this for children is just absolutely vital.

We know we wont get a cure for Lily but, as parents, we need to be bigger than that. Other children might benefit through Lily. We are so proud of her.

The UCL study is being funded by 230,000 from childrens charity Action Medical Research and the British Paediatric Neurology Association. Lead researcher Dr Apostolos Papandreou hopes his research will lead to trials of treatments.

He said: The parents Ive met understandably feel devastated at the prospect of their children having a progressive disorder. However, theyre really keen to explore new avenues and participate in research projects.

See the original post here:
Girl, eight, with rare brain disorder in pioneering UCL stem cell research - Evening Standard