Susan K.’s Story

In July 2001, I was diagnosed with an extremely aggressive form of CIDP. The progression was fast and severe. I went from chasing my three small children (4yrs, 5yrs & 7yrs old) around to not being able to feel or move anything from mid-thigh down. Having no feeling and extremely limited movement in fingers, hands & forearms. And having a partially paralyzed diaphragm. I’m in a power wheelchair and used oxygen. Because my CIDP affected my core, my breathing, my life expectancy was 3 to 5 years. For 18yrs, I fought to stay alive as CIDP took over my body. After being hospitalized for 205 days in 1 year, I had a Stem Cell Transplant (SCT) in May 2019. My SCT is a success because it stopped my disease. I’ve had no progression, no hospitalizations & taken no meds to treat CIDP since SCT May 2019. After I was SCT stable, in Nov 2019, I started going 4 hours a week to an activity based therapy center. For the last 4 yrs, I’ve kept that 4 hr schedule religiously. The progress I’ve made is amazing. I’m off oxygen. For the first time in 17 yrs, I can move everything- my hands, my legs, my feet & even my toes. I’m gaining strength & balance. This is the best I’ve functioned in 15 yrs. I need to keep doing activity based therapy. Without it, I’ll regress quickly. With my ongoing medical bills & a new $396 monthly medication bill, I can’t pay for it.


This grant means so much to me. It means I can continue the activity based therapy that I need. That I will continue to progress in multiple areas. The activity based therapy will help me learn how to stand & walk again. To me- this grant also means you are giving something to my husband. Every time (activity based therapy) helps me become a little more independent, it takes one more thing off his plate. One more thing he doesn’t have to help with or more importantly worry about. Everything this grant pays for will have lifelong effects on my family. Thank you for considering me for a grant.