Any experiences with this book: The Autoimmune Epidemic or Cyclosporine A?

Hi everyone, I'm Sas. I'm from Holland and I am 50 years old. (so forgive my sometimes poor English typing;)

I was recently diagnosed with FFA when I went  for a concultation about  a hairstemcell transpant for my eyebrows at the hair-institute from dr Gho in Amsterdam.

I first lost my eybrows when I was about 39 years old. I never had lots of eyebrows so I didn go to the docter at the time, I just had them tatooed  about every 5 years since them. I was certainly not menopausal then, but I also am not menopausal nowadays I think. I still have very regular periods every 4 weeks. So I guess I am somewhat of an exeption here.

I noticed about half a year ago that my  hairline was receding and I was starting to sweat more especially at my forehead. And also have itching skin at my hairline and eyebrows,

I still have a lot of curls, so its  still easy to hide. I was devastated when I heard the diagnosis. I have been to the best academic hospital in the Netherlands in Rotterdam for this type of disease. They took an biopt 2 weeks ago and some blood. I will get the results in  2 weeks. They want to start me  on Cyclosporine A for 1 month, then trie a stemcell transplant on a  tiny place on my forehead, then I  nwill have to take the cyclosporine for another 3 months and then I have to wait another 9 months to see if the hair stays.If that is the case I can undergo proper hairstemcell transplantation treatments. They say I will need this 3 times with 9 months apart, bto restore my hairline comp-letely.

While I am on Cyclosporine I will be monitored  carefully for liver and kidneyproblems and high bloodpressure

I am a bit scared of taking the Cyclosporine and whonder wether to to this all, because I have no garanty the FFa will leave the new transplanted  stemcellhair be

I am also cruising the internetb and found the book   from  Donna Jackson Nakazawa: The Autoimmune Epidemic    Does anyone of you have read and  tried this?

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Replies to This Discussion

Permalink Reply by star on October 27, 2014 at 3:53pm

Hi, i`m 38 and have FFA so not menopausal either......i would be very interested to hear how you get on with your hair transplant, so would be grateful if you could keep me informed, as i potentially would like to go down this route if possible?  

Permalink Reply by Sas Holland on October 27, 2014 at 4:00pm

Hi Star,

ofcourse,  I will keep posting updates here upon the hair stemcell transplant (If I am going to go ahead with that eventually)

I also understand that stemcell  hair transplantation is not offered worldwide yet, is that correct?

Permalink Reply by star on October 27, 2014 at 4:06pm

Hi, thanks for your reply....i just realised that you mentioned "stemcell" hair transplant, i don`t know if that is different from an ordinary hair transplant i`m afraid?

I just thought that i might go to my nearest hair transplant clinic, wherever that might be, an see if it`s a possibility for someone with FFA?

I`m basically willing to give anything a go, i`m so desperate to have my hair back where it`s thinning in the front!!

 

Permalink Reply by Sas Holland on October 28, 2014 at 5:51am

Hi Star, yes, stemcell transplant is different from the normal transplant. With stemcell transplantaion the hair in the donorarea (the back of your head)  will also grow back,  whereas with the normal transplant, the original hairs in the donor area are removed and do not regrow there again.

Permalink Reply by MJ on October 28, 2014 at 6:08am
Sas,
Could you clarify what a stem cell transplant is? I did not think that stem cell transfers of the type to grow whole new hair follicles were to be available for a couple years. I do know that regular hair transplants are not an option for us as it will actually make the condition much worse, possibly activating the condition over the whole head. We have all been warned against any type of trauma or surgery that will engage our inflammatory response since FFA is an autoimmune disorder. Please keep posted on your plans and results.
MC
Permalink Reply by Sas Holland on October 28, 2014 at 6:36am

Hello MJ,

Yes, They told me in the hospital that indeed there is a riskt hat the transplant will possibly activate the inflamation, but they assured me only in the transplanted area.  Therefore  they will only do a test area of 2 by 2 centimeters transplant and I will have to wait for 9 months after that to see whether it will stay put or if it will indeed activate the inflamation. After that period they are willing to do a bigger transplant. As I understand stemcell transplantation is only done here in Holland by dr Gho at the Hair Science Institute, and for FFA patient like me they immediately  send me to the academic hospital in Rotterdam for a consult. And only if this hospital says it's ok to trie, they will do this little test transplant. I am still waiting the testresults and the approval from the hospital. And I still don't know if I am going to do it since I am not looking forward taking the Cyclosporine A also

Hair Stemcell Transplant  (HST) is different from FUE or FUT,  beacuse it will multiply hair. It is only done in Holland  by   Hasci: The Hair Science Institute  in Amsterdam and Maastricht,  and in London and Vienna . With HST they only take a miniscul piece of the hairfollicle out of  the donor area, so that the largest part of the follicle will stay behind in the donor area to form hair again. and there will be no signs od scar tissue  in the donor area. HST is quite expensive I understand.

the website of Hasci: http://www.hasci.com/ but I am afraid it is all in Dutch,

Permalink Reply by Debs on October 28, 2014 at 3:00pm
This condition affects women of all ages. Last year at a CARF meeting I meet a woman with a 4 year old daughter diagnosed with a scarring alopecia. This condition is now classed as an epidemic and women all over the world of all ethnicities and ages are being diagnosed.

Good luck with your stemcell hair transplant.
Permalink Reply by geon on October 29, 2014 at 4:19am
Hi sas, im geon my mother aslo have it. We from South Africa and she is in a total state.We went to a great doctor after wasting 1,6 years on non effective pills. She is now on new stuff starting today (will post it later) it would be great to know if transplant of stampsells are actually possible its not in South Africa but would easily take her far if its a possible way of vringing hairline back! So glad i came across this forum! Thanks everyone
Permalink Reply by Sas Holland on October 29, 2014 at 6:01am

hi Geon, I'm sorry to hear your mother wasted so much time on medicine that didn't work at all!

And hi Debs, thank for filling me in there, I actually thought FFA almost only affected menopausal or  post menopauzal women. It is bad news however. What is a CARF meeting?

I still have so many questions, since I got my diagnosis not very long ago, I am happy to have found this forum

 For instance does anybody know if it is hereditary? Are there cases known where both mother and daughter(s) have FFA? Or is it also possible that you can loose eyelashes too?

Permalink Reply by Sas Holland on October 29, 2014 at 9:41am

oh Rebecca, I am sorry to hear that! I have 2 daughters, that's why I asked

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