“I was getting phone call after phone call from heartbroken parents about their once successful adult child with Down syndrome suddenly shutting down; having major health or mental problems. They have no where to turn. Most doctors don’t have the basic knowledge to treat adults with Down syndrome.”

Amy Van Bergen says it was these regular phone calls she received serving as Executive Director of the Down Syndrome Association of Central Florida for the past 15 years that convinced her to start advocating for new medical guidelines for adults with Down syndrome.

The updated medical guidelines are long overdue. Although life expectancy has more than doubled for people with Down syndrome in the past 30 years, the new longevity often comes with a host of health problems. It is estimated 70% of people with Down syndrome will develop Alzheimer’s. They’re also at higher risk for many immune disorders and obesity. At the same time, they’re at lower risk for experiencing solid tumor cancers, heart attacks, and strokes. Because of this difference in pathology, adults with Down syndrome deserve unique medical care.

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Global Down Syndrome Foundation convinced Amy to use her contacts with other Down syndrome affiliates throughout the country to raise awareness and money for the development of new medical guidelines. The nonprofit spearheaded the initiative at the beginning of 2017, and hopes to have the guidelines approved by the end of 2018.

Global Down Syndrome Foundation is still raising money to finish the adult medical guidelines. Click here to donate!

The American Academy of Pediatrics already has medical guidelines for children and teens with Down syndrome. I bring these guidelines with me every time I take my 5-year-old to his annual well-check. Global says often young adults with Down syndrome “fall off a cliff” when they leave their pediatrician for a new doctor with no medical guidelines.

“We believe this important project will be a “first-in-kind” because (1) Global has enlisted a national medical guidelines organization to ensure there is an extensive literature review process and that any recommendation or guideline is evidence-based, (2) we are fortunate to have several leading U.S. medical practitioners expert in the care of adults with Down syndrome who have agreed to author the guidelines, (3) Global is committed to raising the funds needed in order to update the guidelines every five years so as to build upon new clinical research findings and improve the guidelines with each iteration,” explains Global’s Director of Adult Initiatives and Special Projects, Bryn Gelaro.

Modeled after the guidelines for children and teens, the new adult medical guidelines will include an easy-to-use list of medical assessments and tests adults with Down syndrome should take over the lifespan. “Short term we hope the guidelines improve the care adults receive by reducing the incidence of misdiagnosis, alerting doctors to the specific health needs of this population, and empowering adults and their families to seek proper care. Long term we hope the guidelines build upon themselves, both in the breadth of the content areas covered and in the number of Down syndrome experts that collaborate as authors. We also hope that the guidelines, overtime, will highlight the holes in scientific literature related to Down syndrome so that researchers can address those gaps,” Bryn says.

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In the end, it will be up to self-advocates, parents, adult siblings, and other caregivers to understand these new guidelines, and make sure their doctors’ do too. Many already understand the stakes are high. “I haven’t had to sell anyone on this project. They understand the importance,” Amy Van Bergen explains. “We’ve already raised more than $100,000 in the Down syndrome community. Our goal was $170,000. And Global will match what we raise.”

Amy will be at Down Syndrome Affiliates in Action Annual Leadership Conference this February. She hopes to meet her goal soon, so Global can finish their important work.