I don’t think the process of finding a health care professional to see me, just because I have Spina Bifida, should be this hard.

Who knew that the simple act of growing up, and becoming an adult, would make it nearly impossible for me to find health care.

When I aged out of children’s hospitals and clinics, I had to see my parent’s doctor.

Then, my benefits changed, so I had to find a different doctor. I found a doctor who knew about Spina Bifida and received standard treatment for him for a few years, until my late 20’s, and then he left. I thought, “oh this can’t be that bad, I’ll stay at the same clinic, and just see another doctor here.” First up was a Physicians Assistant who had no knowledge of Spina Bifida whatsoever, when she first saw me, she gave me a “deer in the headlights” kind of look. After her, I had visits with three more Physicians Assistants and a doctor, just trying to find someone who had knowledge and understanding of Spina Bifida – which of course, none of them had. Out of those 5 health care providers, only one of them wasn’t “scared” to see me and actually spent time learning about people living with Spina Bifida. But of course, she’s also now moved on and I’m back to square one.

I don’t think the process of finding a health care professional to see me, just because I have Spina Bifida, should be this hard.

When I have problems, with anything, I have to ask for referrals to specialists. It’s not only incredibly time-consuming, but it’s exhausting. I have to explain myself several times, over and over again just to get a referral. It took three UTI’s in a year to find a Urologist, and an unfortunate trip to the ER to find a Neurologist.

Personally, I don’t think it should take the pain, multiple infections, and ER visits just to find a provider who’s willing to see me. Spinal clinics, and the providers who would take patients like myself, are disappearing. I don’t know if it’s a lack of providers who know enough about people with Spina Bifida, or if it’s the growing frustration of searching & traveling as an adult to find a clinic, but it’s a problem. I’m still actively searching for a Primary Care Provider, someone who will agree to see me as an adult who just also happens to have Spina Bifida.” – Mark Deschamp