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Cypress mother advocates with Beyond Type 1 DKA Campaign to differentiate diabetes symptoms from viruses like COVID-19 – Chron

September 6th, 2020 11:58 am

Cypress resident Anne Imber takes a photo with her son Tristan Edgar, who was diagnosed with Type 1 diabetes in 2009 at the age of 12.

Cypress resident Anne Imber takes a photo with her son Tristan Edgar, who was diagnosed with Type 1 diabetes in 2009 at the age of 12.

Photo: Courtesy Of Anne Imber / Provided By Kimberly Pace, 9th Wonder

Cypress resident Anne Imber takes a photo with her son Tristan Edgar, who was diagnosed with Type 1 diabetes in 2009 at the age of 12.

Cypress resident Anne Imber takes a photo with her son Tristan Edgar, who was diagnosed with Type 1 diabetes in 2009 at the age of 12.

Cypress mother advocates with Beyond Type 1 DKA Campaign to differentiate diabetes symptoms from viruses like COVID-19

Excessive thirst, frequent urination, unexplained weight loss and exhaustion. If Cypress mother Anne Imber and her son had known what these symptoms might indicate, he could have been treated sooner for the serious health complications from his undiagnosed Type 1 diabetes.

Type 1 diabetes is a chronic autoimmune condition that causes the bodys immune system to mistakenly attack the insulin-making beta cells of the pancreas, explained Dr. Daniel DeSalvo, pediatric endocrinologist at Baylor College of Medicine and Texas Childrens Hospital.

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If a person with diabetes isnt receiving insulin, then they can develop a life-threatening condition called diabetic ketoacidosis, or DKA. It causes stomach pain, nausea, vomiting, tiredness, lethargy, sometimes it can cause rapid or heavy breathing, and if its severe it can lead to the point of confusion or even unconsciousness, DeSalvo said.

DeSalvo is on the science advisory board for Beyond Type 1, a nonprofit focused on building awareness and support for people with Type 1 and Type 2 diabetes worldwide.

Among the organizations initiatives is to prevent the development of DKA by educating people about the warning signs of Type 1 diabetes.

Imber became a Beyond Type 1 volunteer after her sons diabetes diagnosis and has been advocating on behalf of the DKA Campaign.

Texas was actually one of the first states to adopt the Beyond Type 1 DKA Campaign, Imber said. We have a really passionate group of diabetes advocates in the Houston area, and especially in the Cypress area, because we have a Type 1 diabetes school advocacy group.

One factor that can lead to the delayed diagnosis of Type 1 diabetes is the symptom similarities to some viral illnesses such as the flu or a stomach virus, DeSalvo said. During the COVID-19 pandemic, making people aware of Type 1 diabetes telltale symptoms is of vital importance.

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Its an issue that Imber knows all too well.

Imber said her son Tristan was 12 years old when he and his sister contracted the swine flu in 2009 during the H1N1 pandemic.

My daughter immediately bounced back, Imber said. She was on the mend in two days. My son, he went down with the swine flu and then he never recovered his full energy that hed had before. He started suffering from extreme exhaustion. He started having a lot of weight loss.

There were many factors that Imber thought might be at play he was slimming due to a growth spurt; he had started running cross-country; and, of course, hed just been sick with the swine flu.

He would come home incredibly exhausted, falling asleep, and I really attributed it to the swine flu his recovery from the swine flu just not taking the path that his sister had taken, Imber said.

He continued to go downhill over the next month, losing 20 pounds in just four weeks. Hed tell his mom he was starving but was too nauseous to eat. He became more emotional than usual, Imber said. She knew something was wrong, so she made a Friday appointment with a pediatrician.

They knew immediately how bad it was, but they wanted us to come back Monday morning for a fasting blood glucose (test), she said.

Halloween happened to fall on that weekend. Thank god he did not eat his candy, Imber said. He was waiting for his braces to come off on Tuesday.

By Tuesday morning, his pediatrician had called to relay his diagnosis Type 1 Diabetes.

They realized Tristan had been going into phases of DKA because of his untreated condition.

Because he was running cross-country, his blood sugar would go really high and then it would drop again because of the activity, Imber said. So, it was a really unusual case and thats one of the reasons it took so long to manifest in really obvious terms of, something was seriously wrong.

Imber believes something as simple as an informational poster in the doctors office waiting room, like the ones distributed by the DKA campaign, could have tipped them off sooner.

He hadnt been sharing the excessive thirst and the frequent urination because 12-year-old boys dont do that with their moms; they dont talk about those things, she said. And I know had he been sitting in that office at that time with the DKA Campaign poster there, he would have been able to say, Mom, Ive been having these symptoms and that wouldve really prompted us to get immediate help Friday versus waiting until Tuesday to seek out support for him.

Nowadays, Imber said a DKA diagnosis warrants immediate hospitalization; but at the time, doctors felt the severity level of Tristans condition was low enough to treat him outside of a hospital. Imber said her son was fortunate to not have experienced the organ failure that some do from DKA. She knows of several cases in which lives have been lost because of an incorrect or delayed diagnosis. If her son had not been diagnosed in a timely manner, Imber doesnt doubt he wouldve ended up in the hospital.

We were lucky that he did not incur that seriousness of it, but we immediately saw relief from being able to be treated with the insulin under the care of an endocrinologist, and then started that learning process on how to manage it with the insulin dosing since his pancreas was no longer able to provide that hormone to regulate his food intake, Imber said.

Imber had attributed several of Tristans diabetes symptoms to the residual effects of his flu recovery a relatively common misidentification among people with undiagnosed diabetes, she said.

When its flu season, youll see a lot of people struggling and thinking, It is just the flu, but in reality there are some symptoms that really stand out that frequent urination, that excessive thirst that really differentiate from a flu symptom, Imber said.

The COVID-19 pandemic presents similar challenges for the diagnosis of Type 1 diabetes and DKA, explained Beyond Type 1 Leadership Council Member Michelle Berman.

We are seeing many families protecting themselves and wanting to avoid visits to doctors or the hospital, Berman said. And on top of that, if they arent armed with the knowledge of the warning signs, they also arent taking action when they appear. We really want families to get to the hospital or contact their physician right away, in spite of COVID or in addition to looking for the COVID warning signs. Type 1 diabetes does not stop just because theres a pandemic.

Berman serves as the National Family Advocate for the DKA Campaign.

Her child was diagnosed with Type 1 diabetes in 2007. She took him to the doctor after hed fainted from what she thought was abnormal blood pressure. After his diagnosis, Berman felt frustrated that shed never been made aware of the warning signs for Type 1 diabetes.

Berman learned of the Beyond Type 1 organization in 2016.

So, I partnered with Beyond Type 1 as a family advocate and began working on partnerships with the American Academy of Pediatrics and individual chapters in each state, Berman said. Together, Beyond Type 1 and the AAP partnered and brought awareness to families. Currently, I think theres 25 states across the country that partnered with Beyond Type 1 and disseminated materials warning signs, posters, fliers and handouts to families at well visits.

The campaign began its push to disseminate the information in November of 2016 and has distributed the material in 25 states to more than 28,000 pediatric offices serving over 90 million patients a year, according to Berman.

And thats just phase one.

With a grant from the Helmsley Charitable Trust Foundation, we were able to expand the campaign into phase two, into 10 states across the country, Berman said.

Phase two targets the general public, schools and businesses such as gyms.

In February of this year, the National Association of School Nurses partnered with Beyond Type 1 with the awareness campaign, and so thats been very exciting to expand beyond the pediatricians, Berman said. With the school nurses, were raising awareness of the warning signs, really to be distributed to tens of thousands of school nurses nationally in the United States. So, weve been really thrilled with the awareness and partnerships with this campaign.

For more information or to get involved, visit http://www.beyondtype1.org/dkacampaign or email dka@beyondtype1.org. Find Beyond Type 1 on social media: @beyondtype1.

mfeuk@hcnonline.com

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Cypress mother advocates with Beyond Type 1 DKA Campaign to differentiate diabetes symptoms from viruses like COVID-19 - Chron

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