Dana Crumpton, a student in the health care management program at Globe University-Madison West, calls himself an odd duck. Why? Because when he was eight years old, he was diagnosed with familial hypoparathyroidism, a disorder that affects the parathyroid.
“My case is very rare,” Dana explains. “Ninety percent of hypoparathyroidism cases are caused from thyroid or other neck surgeries. In my case, it’s genetic. My father and grandfather both had it.”
Hypoparathyroidism is a disorder that causes lower than normal levels of calcium in the blood due to insufficient levels of parathyroid hormone. Symptoms include weakness, headaches, tetany, loss of memory, muscle cramps, abnormal sensations of the hands, insomnia and fatigue.
Thanks to his doctor, Dana was introduced to the Hypoparathyroidism (HPTH) Association, Inc., a nonprofit organization devoted to helping those with all forms of hypoparathyroidism. Their mission is to educate, communicate, support and help raise money to support research.
In June, Dana attended their international patient conference in Washington, D.C. This was a golden chance to network with doctors who specialized in this disease and meet other diagnosed patients. One specialist even came all the way from Bahrain to speak about how that country is handling the disease through grants and research.
Dana also discovered many different medical case studies currently being conducted. He immediately got involved and is currently participating in two case studies. “The first study is to find the gene which causes the illness,” Dana explained. Because Dana is one of the very few that has the genetic form of the disease, his involvement is valuable.
The other medical case study is for a new drug. It is a six-year clinical trial for an insulin drug, and participants are monitored to see how it affects the efficiency in the calcium in his bones.
“Right now my medical records are being reviewed; I’ve already passed the preliminary screening,” Dana said. “Once I’m cleared I will be part of the study which involves me going back to Washington, D.C. for a complete blood screening, bone biopsies and meeting with a dietician. I would then be on the drug and then continue to be monitored.”
With experiencing years of uncertainty, frustration and the unknown, the recent connection with HPTH Association, Inc. has been priceless for Dana, both physically and emotionally.
“This means so much to me,” he said. “For one, I’m doing something for good for others in the long term. Up until I heard about this association, I felt like I was alone because it was such a rare disease. I’ve gone through the years with new doctors who didn’t have a clue of what I was talking about. They would have to reschedule my appointments so they could do research. When I came to Madison, I found a doctor who was very knowledgeable and focused on [educating] other endocrinologists. That started this valuable connection.”
As for his career plans with his health care management degree, Dana said, “I’m hoping to get into the advocacy part of health care—working more as a case manager, working as a liaison between patients and insurance companies.”
Thank you to Dana for sharing his story and raising awareness of hypoparathyroidism. Because of his determination, Dana has found a community just like him, focused on gaining awareness, offering support and raising research money.