Here at Patient Worthy we’ve written before about the heavy toll Severe Combined Immunodeficiency (SCID) can have on families and about the lessons learned from the most well-known SCID case, David Vetter AKA “Bubble Boy.” While great leaps have been made in our understanding and treatment of SCID, there’s still a lot we can learn.
Case in point: The disproportionately high number of SCID cases among the Amish population in Lancaster County, Pennsylvania.
While the occurrence of SCID in the general population is very low—the NIH estimates one in every 40,000 to 70,000 births—among the Amish population the numbers are much higher thanks to a smaller, less genetically diverse population.
For example, in just one family, three out of 12 children were born with the condition. Because people in the Amish community share such a small pool of common ancestors—roughly 80 ancestors for 50,000 people—otherwise rare conditions like SCID get passed along with greater ease than if they were found in the original population.
While treating SCID can be a challenge for any family, it’s easy to imagine how much greater the challenge can be in the Amish community.
So it’s heartening to see that modern medicine has come to them rather than the other way around.
Dr. D Holmes Morton opened The Clinic for Special Children in Strasburg, Pennsylvania in 1989. Since then, the Clinic has been providing care in the Amish community for a range of rare genetic diseases at drastically reduced costs.
According to Dr. Kevin Strauss, the Clinic’s medical director, the local community saves millions of dollars a year by cutting the number of hospital visits and morbidity rates. In turn, the community helps chip into the Clinic’s operating budget through fundraisers and auctions.
In communities with virtually zero health insurance, this is a huge deal.
Also a big deal? Some of the groundbreaking work the Clinic has done in using genetic mapping and diagnostic tools to better identify and understand the rare diseases impacting the Amish and Mennonite communities it serves.
Indeed, Morton was an early advocate of genomic medicine and testing, and used it to better understand how rare conditions like SCID impacted isolated communities.
The team leading the Clinic today—along with the deeply traditional patients they serve—may well end up pointing the way to how our larger, national patient community treats these diseases in the future.
To learn more about the work of The Clinic for Special Children—including their groundbreaking work in genomic medicine and genetic testing—check out this article and visit the Clinic’s website.
