kadaso, billt and all–i got accepted into stem cell trial

Great news.
Dawn Kevies mom

Dear Alice!

I just found and read your blog. Congratulations on being accepted into the stem-cell programme, and I wish you the best of luck both with your insurance problem and the treatment itself!

I have been so lucky; after batteling what my neurologist diagnosed CIDP for years, he finally handed me over to an oncologist\hematologist who found the correct diagnose (Proteinaemic Demyelinizing Neuropathy – PDN – that involve other immune-cells than CIDP) and gave me a chemotherapeutic treatment – Rituxan – that gave me my life back. It’s four years now since I had the treatment, and even if I still have nerve-pain and fatigue, I would say that I’m 80% recovered compared to the worst periods of my illness. I can live with that!

If I compare my situation as a CIDP patient in Norway with being a patient with the same diagnose in the US, the bad thing is we don’t have stem-cell treatment here, but the good thing is if we had had it, the state would have paid for it.

Again, I’m crossing my fingers and toes for you, and if you feel like it, don’t hesitate to contact me through “Private Meessages” or via my e-mail address given on the Forum.

Alice,

Congratulations and good luck !!!

I mean both with all of my heart. You will face deep challenges both to you and your family. You will be doing such wonderful research for all of the rest of us. I am thoroughly jealous.

I am also concerned. It is a very challenging procedure. My brother went through a similar treatment regimen for multiple myeloma. My heart goes with you and I offer my prayers and support all the way through.

Keep on letting us know how it is going. I am with you all the way.

Dick S

I wish you much luck with this.
As I have posted on this subject in the past, I find it incredible that all costs wouldn’t be covered by the doctors/researchers working on this, in the name of research.
If we, (us CIDP/GBS people here), had a well known disease such as MS, MD, etc., I’m sure costs involved with research with stem cell and CIDP would be covered.
But, because we have a rare disease, the costs are on our backs.
Let me know how it goes, Alice. Both with the actual procedure, as well as the insurance coverage/financial coverage.
I’ve had long talks with my neuro, and he has said he is not satisfied with the results yet of the the stem cell/CIDP research. He said if he was satisfied, then he would join in their research, and open it up to his hospital since he is head of neurology.
All the best,
Kedaso
(Ken)

Hi Alice,

I just caught wind of your acceptance into the trial. I wish you luck with this and hope you benefit from it. tim

Great news Alice. Regarding your insurance issue, have you contacted you congressman or senator? With the new President’s push on healthcare, you may find some powerful support from the political front. Good luck.
Fred