The story of Ryan
I am 38 years old. I started to notice problems with my balance, gait, walking, and going up and down stairs when I was 25 years old. These problems got progressively worse, and I started to seek medical help when I was 32. I saw many neurologists and had many tests done. It wasn’t until June 2021 when I was FINALLY diagnosed with Hereditary Spastic Paraplegia (H.S.P) at the Mayo Clinic in Rochester, MN. Finding out my diagnosis was such a relief! It may have taken a while and I know that there is no cure for HSP, but I no longer have the feeling that I am imagining all of this or that I am just clumsy. I do, indeed, have something that is wrong with me.
In April my wife and I are expecting our 3rd child in April. However, our child has developed the worst form of Spina Bifida (Myelomeningocele) and “club foot.”. The good news is that we had further tests that revealed that the brain and heart are developing just fine.
If you ever get down about your Rare Disease, just remember, “you weren’t given this if you weren’t strong enough to overcome it.”