I was diagnosed last March with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) a progressive autoimmune disease that damages the coating around the nerves and the nerve fibers. It is an abnormal immune response that causes the body to attack itself. In CIDP the immune system starts to attack the insulation around the nerve, which is called myelin. I have lost strength in my arms, hands, legs, and feet which makes it hard to walk and do daily activities. I also have numbness, pain, and impaired balance. This disease can make me wheelchair bound, rob me of my ability to breath, or end in death.
The treatment that I have been receiving is very expensive and isn’t working as well as it once did and might not help much longer. There is a treatment that is giving me hope. Hematopoietic Stem Cell Transplantation (HSCT), which will reboot my immune system and give me a new lease on life. During the transplant, my adult stem cells will be harvested, my immune system will be killed off with chemotherapy and I will receive my own stem cells back similar to a blood transfusion. I will then need to wait for my stem cells to grow and produce a healthy immune system. With a successful treatment, I will no longer need my medications for CIDP and my strength will be regained giving me hope to a better future.
There are many financial challenges to HSCT. Insurance doesn’t always cover the transplant and I will have many out-of- pocket expenses including temporary relocation expenses to stay in Chicago for about two months, caregiver expenses, post-transplant medications, deductibles, co-pays, lab fees and much more.
To help with the financial burden of my uninsured expenses, a fundraising campaign in my honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible to the full extent allowed by law, are held by Help Hope Live in the Mid-Atlantic Stem Cell Transplant Fund, and are administered by Help Hope Live for transplant-related expenses only. Please consider making a contribution. Click Donate Now. All donations are very much appreciated.
Join me in the fight against CIDP!
Thank you in advance for your support.
May 6, 2017
Sorry I haven’t been updating for some time as we had family related things that needed to be handled. As for myself I’m almost in remission but will always be on medication. So really not in remission as my immune system is still fighting to destroy my nerves it just has a wall up and can still relapse if I get a bad cold. I’m still on prednisone, cellcept, and gabapentin. My nurse comes to the house to give me IVIG every 3 weeks. I can walk without a cane but only for so long and then I need to sit because of bad back pain. My hands are not steady so I can no longer draw or do pen and ink pictures which was my favorite medium to use. I want to say Thank you to everyone whom has donated this far as when I go to Chicago it will help out tremendously. I will update again when I have more news. Thank you again
July 1, 2016
Hi Nancy, we're friends of Beth Applegate. She told us about your caring spirit and generous nature. And the challenge you now face with CIDP. Please know we hope the best for you and your family.
sincerely, Mary Rose Martini and Ed Nonnweiler
June 3, 2016
Nancy I know you have gone through a lot. You are a fighter. I am asking my friends to share your story and this page. I hope you are able to raise the money to get the treatment you need to return to a normal healthy life. You are in our prayers as always. Love you my friend!!!!