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