Hi everyone,

I haven't been posting on this forum much lately. Since my FFA diagnoses in nov. 2014 it seems to be dormant and I have decided to put my story here, because it might give hope to anyone out there that it can be dormant or burn out.

I review stem cell transplants and medication. However it is my personal journey, I decided what's best for me and I respect everybodies methodes to deal with this totally. I wish everyone all the best of luck!

Sas

My dormant FFA journey, Nov. 2016

History:

I was diagnosed (with a biopsy) last nov 2014. I am 52 years old now and was at that time not menopausal. I am still having my periods fairly regular today, but not as regular as they used to be.

I lost my eyebrows about 12 years ago very slowly and since I never had much eyebrow hair I never thought of a disease at the time. When I look back I can see now that I had a lot of stress at that time concerning the wellbeing of one of my children. But I just had my eyebrows tattooed from then on regularly every 3 years. After the first time, my eyebrow hair, or what was left of them, fell out completely very soon.

It is only since I went to the Hair Science Institute in Amsterdam in august 2014 to discuss a stem cell transplant for my eyebrows I know about FFA. Their doctors Novia Mozart and Coen Gho then told me they suspected I had FFA. I was in total shock. I never had an itchy or flaking skin or redness on my scalp, so I never really noticed. I also have worn curly bangs my whole life, because I have had eye surgery on my (since birth paralysed) right eyelid. So you can never see my forehead properly.

I did notice in 2014 that the top of my forehead was very shiny though. And I began to sweat more at the hairline. The strange thing is that since I have the diagnoses I do feel it itching a bit every now and then at my hairline and my eyebrows, but not so much that I need medication for it. But maybe the itching is psychological because I know now about FFA and arevery conscious of it.  My hairline has receded about 2 cm I guess when I see old pictures of me and it is still fairly easy to hide with my curly hair.  Strangers do no notice it, because I have al lot of curly hair.

Biopsy:

My biopsy showed very little inflammatory activity in Nov. 2014, but it (FFA) is definitely there though, they said. So I guess my FFA has been very slowly active the last 12 years because I never really noticed my receding hairline before 2014. I also only then became aware  (after the doctors pointed it out) that I don't have any hair on my arms and on my upper legs. I do still have eyelashes thank god.

Stem cell transplantation and Cyclosporine:

My derm professor dr. Neuman from the Erasmus hospital in Rotterdam wanted me to start on Cyclosporine A, but I never have used a lot of medicine and since my FFA is very little active I didn't want to take such a strong and heavy medicine (yet). This Cyclosporine is very bad for your kidnies and can give you high blood pressure. The Cyclosporine was a must if I wanted the stem cell transplant to restore my hairline. 

They would only perform that if I took the medicine and the FFA has to be dormant too (like mine was). They would do a test stem cell transplant on a little area with 50 grafts first and then I would have to wait 9 months to see whether the new hair would fall out or not. If the hair would stay then I would need 3 stem cell transplants, each 9 months apart, to fully restore my hairline they said. With the Cyclosporine to be taken every time for about a couple of months. This medicine sometimes slows down the FFA completely.

And a small risk from the stem cell surgery with the tiny incisions itself would be that the dormant FFA can be in fact activated again. That is why you need to take Cyclosporine before and after the surgery.  This risk is much bigger if I would have a “normal” hair transplant, since the holes/incisions they then make will be much bigger. That’s why a FFA patient should never have a normal hair transplant they told me.  This is also I think the reason that after my first eyebrow tattoo (tiny incisions), all the remaining hair fell out quickly. But I cannot tell for sure that was the reason, it could have fallen out completely without the tattoo either.

He told me then that they these stem cell transplants are still expirimental. They had treated about 50/60 women with FFA so far (in 2014). They first did one in 2011, they treat all FFA patients in the Hair Science Institute in Maastricht in the Netherlands. He thought about 80% of them still had the transplanted hair, back in nov. 2014.

Other medication:

Dr Neuman also told me that the “usual” medication like Finasteride, Ketaconasol, Dutasteride, Rogaine and Minoxil 5% don’t work for FFA patients, only for the male form of baldness, which can also occur in women.  These medicines work for hair follicles that are being blocked by male hormones. The difference is that with FFA the hair follicles are completely destroyed. There would only be a chance of re-growing some short fuzzy hair.

About steroid injections he said that they would only work for a short period of time so you would have to repeat them over and over and that that would wreck your skin.

Auto-Immune disease and diets:

I started to look for more information on FFA as an autoimmune disease and found a lot of information there in relation with food and a leaky gut and the Autoimmune Protocol (A.I.P.), which is a anti inflammatory diet. I hoped that by eating differently I could at least have a bit of influence on my FFA, to stop it definitely.

I have read a book from a doctor called Sarah Ballantyne (she is also called "the Paleomom" and the book is called "The Paleo Approach" It's especially for people with an autoimmune disease.  

A.I.P. is an elimination diet for about 4-6 weeks; no grains, pseudo grains, dairy, nuts and seeds (and spices and oils from them), nightshades, legumes, refined sugar and adding other healthy foods. Than you can gradually start to re-introduce very slowly.  I have done it for about 8 weeks. The first week was very hard for me; I didn't know what to eat for breakfast at all. Then it was easier and I had no hunger and the weight loss was a bonus as well. Well, after all I did not notice anything different from this diet, I already felt good overall and had no pain or a lot of itching so I stopped the diet after these 8 weeks.

Then I decided to give another diet a chance based on my blood levels of IgG.

I had my blood tested for all 4 classes of IgG (immunoglobulins) on 360 sorts of food and I got a list back of al sorts of food, which I should never eat again. This test was very, very expensive and I tried this diet for about 5/6 weeks. I also got acupuncture at the same time (same pseudo-doctor) and did not notice anything different other that this diet was also very hard to follow. Since I never really had pain or a lot itching I stopped this diet too.

Past 1,5 years; meditation and possitive affirmations:

The past 1, 5 years I have not tried anything else, I eat normal and have never used any medication. Iam no longer seeing my derm. I did start meditation lessons to lessen the stress and that have helped me in general a lot not to worry about my hair so much. This is of course not so difficult since I can hide my FFA still fairly well. I also started to say possitive affirmations almost everyday  like for instance  "my body is whole and healthy and will heal itself".  I am however still unsecure about my bangs and keep putting my hands through it all the time. I am very aware of my hairline now that I know it. But I concider myself very lucky that I do not have to wear a wig (yet) and that other people don’t notice it at all. I am happy with my tattooed eyebrows as well, much better then drawing them everyday. I  have hopes my FFA has burned out completely instead of being just dormant.