Replies to This Discussion

Permalink Reply by Debs on August 9, 2013 at 4:52am

Hi Lexi, there are no hard and fast 'cures' for FFA as you know, it maybe that stem cells treatment would be effective but I have not heard of any doctors here in the UK or anywhere else investigating this option. I can only say to you that I am trying to really concentrate on staying as healthy as possible, I already go to the gym 3 times a week and eat healthily but I now have started juicing vegetables twice a day to increase my vitamins and minerals, also many veg have ant-inflammatory actions; ginger root, turmeric etc.. I am also using Dr Wiel's anti-inflammattory diet advice, I see you have already given up gluten and suger which he advises. I hope doctors do find an effective cure for us but I think from what you have written you are being very proactive with your well being and doing a great deal of self-help. The ladies on this site are fab, any new treatments/theories we hear of we post on the forum so you wont miss out on any new info now you are part of this great group. XXXX

Permalink Reply by April on August 9, 2013 at 9:48pm

Hi Lexi,
Welcome to this forum. Sorry to hear about your struggles. I am 36, I first noticed hair loss about 3 years ago. It seemed to stop for a long time then start up again after the birth of my baby. Like you, I have also been gluten free for about 6 1/2 years, but it has not had an effect on the FFA. I have not heard about stem cells being used as a treatment, but it is worth looking into. It seems like most of the treatments for FFA are pretty experimental at this point. Have you talked to your doctor? It seems like some are more knowledgable than others. There are a few ladies here that have seen the top specialists in the country for FFA. If you scroll through the comments you can find the info they have posted. Definitely let us know if you find out anything about stem cells. Try to stay positive, I know it is hard!

Permalink Reply by Lexi on August 10, 2013 at 8:19am

Thank u to carol, debs and April for your kind replies , felt so good receiving messages from others who know exactly what I'm going through . I have been like this for 6 yrs and aware of it about 4. But in these 4 yrs no one knew about my condition apart from my husband 2friends,a cousin and my parents. I have been disguising it very well. I have long hair and try to keep a fringe, when can't Im in a scarf worn as a wide band. It's horrible as never can share my problems with someone going through the same thing, I look around at crowds when out and I look at every persons hairline and sides , I have never seen 1 person with my condition. It's really unbelievable .

Debs , I have heard and looked into and followed slot from dr .wiels. Since I embarked on this healthy regime the only thing that changed is slot of my itching on my legs stopped . My scalp never itched. What I had on my scalp is the hair folic had white coming out of it. Just at the top
Of my forehead. Wonder if anyone has this. I just stashed getting it again as I've been sinning with my diet slightly. but otherwise my hair still kept receding and eyebrows nearly gone.

April : thanks for your reply too, u seem to be quite in my same boat , 36 , young child, I blame what happened due to my C-section, we think it could have been the spinal block. Did u have a c section by any chance, or some form of anesthetic ? I constantly researching and 2 wks ago came across a recent survey where they r thinking a face lift and some other op is causing women FFA , but nothing is confirmed as yet.Still being studied

As for stem cell , there is a possibility as my husband called this clinic this wk , which is in holland and they said it's possible to regrow hair on scared scalp, but the FFA would have to be at it terminated stage. As FFA stops at one point, usually after 5 inches I had read. This is when they can do a test patch. Even eyebrows can b done. So for me for now, I can't consider it :( unfortunately as mine seems to still b active.

Hope to keep in touch with u all as I so happy I can finally TALK about my condition to someone. Makes me feel so alone what I have.



Regarding

Permalink Reply by Debs on August 10, 2013 at 2:05pm

Hi Lexi, thanks v much for the info on stem cells.. that would be very interesting when our FFA has finally burnt itself out. Like you my scalp does not itch, I thankfully never have any sensation from it. My hair follicles sort of become enlarged just before the hair falls out, Liz in this group has described it as looking like 'dolls hair' at the roots when it is going to fall out.

This group is a lifesaver, to have other ladies with FFA that I can talk to has definately stopped me becoming depressed.

Have a lovely weekend. Deb xx

Permalink Reply by JanBrids on February 2, 2018 at 5:03pm

Did you have a c-section?

Hi ladies, the original post is from a few years ago and hoping that you’re still active on the forum. I’m new to the forum, 42 years old, and if I think back, my hair loss started about a year after my twins were born (my second c-section) in 2010. First with my eyelashes, then with arm and leg hair, and in the past two years my eyebrows and now finally the hair on my head.

What I find interesting is the link to the c-sections. Normally after the baby/babies are born we get oxytocin (Pitocin) in a drip/IV to stimulate the uterus to contract. Oxytocin is a hormone, and if the powers that be believe this is a hormone related disease... then maybe?

I’m interested if others who have FFA and are premenopausal can chime in and confirm if you had a c-section?

Permalink Reply by MnM on February 4, 2018 at 3:56pm

Hi Jan Brids,, I was diagnosed at 28, I am 35 now.  I had no children when it started and have since had two kids, both born via C-section.  I know my trigger was stress as I was in grad school and working full time when it started.  I will say that I was completely symptom free during both my pregnancies.  My conclusion is that your autoimmune system is somewhat suppressed during pregnancy so you don't reject the baby and my FFA being autoimmune related was completely quite. Both times I had no symptoms until after I stopped nursing, so I'm sure hormones played a part in there too.  

Permalink Reply by Chrisy, MA USA on August 13, 2013 at 8:18am

Hi Lexi. I'm also 37 yo and for me hair loss started with my eyebrows about 4 years ago. Recently I was diagnosed with FFA and like most of us I'm trying to find answers. I take plaquenil and turmeric twice a day for about 6 months now. I don't see any changes yet. I actually noticed other parts of my body to shred like my arms and my eyelashes. I used to get steroid injections and I believe it helped with my eyebrows especially until I got dents on my face and I stopped them. Stem cell might be sth that will help. I'm hopeful sth will come up soon.

Permalink Reply by Debs on August 13, 2013 at 1:07pm

Chrisy can I ask you please... are the dents from the steroid injections on your scalp where the doctor injects or does it cause dents on your actual face?? I ask because this is going to be the next course of treatment offered to me when I see my derm in November if the plaquneil does not work... I don't want to end up with marks on my face. Thanks XXXX

Permalink Reply by April on August 13, 2013 at 1:28pm

Chrisy, I am curious about the injections too. I just received my first round of kenalog injections last week. My doc is hoping this might help me regrow some hair. Did these dents go away or are they permanent? Thanks

Permalink Reply by Chrisy, MA USA on August 13, 2013 at 4:15pm

I had injections on my hairline and eyebrows. At first I noticed the dents on my scalp where the doctor injected the steroids. On the last visit which it was the third round of the steroid injections I noticed indentation on the eyebrow area where the needle went in. At that point I also stopped using the steroid cream which I used once a day. It has been a month now since then. The dents on my scalp are no longer there but on the eyebrows is still noticeable. I talked to my doctor about it and she assured me that it will go away eventually. I'm still waiting. I also google it and I found out that it takes time. I'm frustrated bc of this. I was worrying for one thing and now I'm more worry about this terrible dents that you cannot hide. Is there anyone else experiencing this and if so how long it takes until the skin goes back to normal??

Permalink Reply by Lexi on August 13, 2013 at 7:18pm

Hi Chrisy , it's amazing , till 2wks ago for 6 yrs I always felt I was the only 37 yr old with FFA. now there's u and April that I know of . Hope we'll remain in contact and help each other. What I'd like to tell u about the steroid injection, is I had them done too , about 3 yrs ago , but stopped right away never went for my 2nd . As I too got a long dent on my forehead near hairline . I remember I kept on with the steroid cream and later was prescribed plaquenil which I eventually stopped as I felt it's all for nothing taking theses strong meds and still being told it's no cure . Specially being quite anti conventional meds. I had later visited a top derm professor , her name is Antonella tosti . She's italian. She had prescribed actos , which r strong meds for diabetes type 2 which I totally avoided taking . So I basically take and do nothing , just trying to keep an alkaline diet as much as I can which is tough . I just hope I'm close to my FFA stopping naturally . The sad thing is that I been wanting a 2nd child and FFA has always stopped me from trying . My husband and I r afraid a 2nd pregnancy might cause something else

Permalink Reply by Lexi on August 13, 2013 at 7:21pm

Sorry girls forgot to mention , the dents took a while to disappear . But it still shows very slightly , I mostly can feel it rather than c it

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