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Devastated over FFA diagnosis
Well, I was just officially diagnosed with FFA on Tuesday. I am completely devastated at the moment and feel so lost. I have been "lurking" on this site for awhile now, but have not had the courage to post. My hair loss started in about 2006, right after I had my first flu vaccine (after suffering a debilitating flu in 2005). BTW, I was also starting to feel some signs of peri-menopause at this time. It happened rather suddenly...my right temple...maybe over a month period (or at least that is how it seemed)...then nothing for a year. The next year I got another flu vaccine, and my left temple went. I still didn't connect the dots and got one more flu shot in 2008, only to find my hairline starting to recede with little bumps around some of the hairs. Each time this happened, I went to several doctors including five different dermatologists and two endocrinologists. No one knew what to do with me. Several dermatologists kept telling me it was caused by me wearing my hair in a ponytail, even though I never did! Anyway, since the major shed in 2008, my hair seemed to calm down and I didn't notice any big difference until about 3 months ago (so, for 4 years it was rather stable), when I started to notice more wispy hairs at the front of my hairline. I must have been in denial or something, because when I went in to get my hair done a couple of weeks ago, my stylist asked if I was losing more hair (she has been my stylist forever) up front. I came home and looked in the mirror and sure enough, I could see more of my scalp and little red bumps at my hairline. On the recommendation of a friend, I went to see Dr. Strict up in Santa Monica (I'm in the L.A. area) for a biopsy and it came back as FFA. I had a long talk with Dr. Strict, who is supposedly an expert in women's hair issues, and he told me that there really is no effective treatment for this particular hair loss...that it will burn itself out eventually, and then maybe I could have a hair transplant after a year or so of no symptoms. He did give me corticosteroids to put on my scalp twice a day in the hopes of getting the inflammation down and saving some of the hair follicles, but he didn't think much of the anti-malarial or tetracycline, or anything else. I don't know what to think at this point. Basically, I have lost hope at this point. I also lost my mother a year ago to cancer, which was the most devastating thing I've been through. I feel like just as I'm starting to get back on my feet, another big blow comes my way. I have always been active and have taken pride in my appearance, especially my hair, and now I feel like I have to hide. I am just not sure where to turn. I just needed to tell my story and I appreciate any and all suggestions as to how to cope with this disease right now. I feel so alone and scared. If anyone knows of any other doctors in the Los Angeles area, I would appreciate their names too. Thanks for listening.
Replies to This Discussion
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Permalink Reply by Celia on
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Hi Maddy - welcome to our 'elite' group. Very sorry you are going through this. We are all in the same boat. About a year ago out of desperation, I started this group, just needing other people to talk to. I haven't told any friends here in UK - we moved back from Dubai after 8 years there , last September. I was diagnosed in Feb 2012. I have lost about an inch from my hairline and above my ears too.
I use clobetasol steroid cream and take hydroxychloroquine though the latter with not much confidence. I think my hair has been shedding more since I started the hydroxyl a few weeks ago, a side effect of this med is actually hair loss which seems a bit of a peculiar drug to be given to slow down hairloss !
Some of us are trying turmeric capsules as an ant inflammatory. Curcumin is another one to try.
I believe my hair loss began following a severe bout of pneumococcal pneumonia at the end of 2010. I was pumped full of so many drugs and suffered sudden weight loss. I had to have physio to get me walking again. I think the shock to my immune system triggered this and I know of one other lady who also has alopecia following pneumonia.
I understand that hair transplant does not work in the case of FFA - the hair will fall out again because the area is damaged. I was pinning some hope on this but I fear it cannot happen.
We have to try to be positive in all this and I know it's not easy. Please keep communicating on this site, Maddy - you can tell it like it is, however bad you are feeling, it does sometimes help to write it down and know that we understand. X -
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Permalink Reply by Kath UK on
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Hi Maddy,
welcome to the group. It is a horrible diagnosis, I know, and I do sympathise with you - especially as you've only just learned that the hair loss you have is FFA. It's really good to be able to express how devastated you feel and I'm sure you'll find this group very helpful and supportive. It's been a lifeline for me and I'm so grateful to Celia for starting it up last year.
We all have our different ways of coping with FFA and if you look through the posts you'll get some ideas about what medications there are and wearing things like Buffs and hairbands and hairpieces etc.. Don't despair! Look in the mirror and tell yourself you're still a beautiful woman (I do that and I'm probably old enough to be your mother!). -
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Permalink Reply by Debs on
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Hi Maddy, I am in the UK but there are several other ladies in this group that live in the USA. They can give you info on derms that can help you and have specialist knowledge of FFA in your area. The CARF organisation is based in the USA and their website can also put you in touch with derms that have an interest in FFA. I am sorry that you have received FFA as a diagnosis, it took me over a year to get my head round it and come out of shock.... but this group is fantastic and there will always be a sympathetic ear to be found whenever you post on here. I would say do be kind to yourself and just take it one day at a time until you feel less traumatised from this diagnosis. Debs xxx
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Permalink Reply by PamW San Diego, CA, USA on
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Maddie, I am in San Diego, and I know there is a CARF support group that meets in Los Angeles. please contact that organization and get info. I have heard of your doctor, but if you want to get another opinion and advice, CARF will be able to refer you to a doctor that knows about our disease. Also, Dr. Vera Price of UCSF has done much of the research for CARF.
I also have very down days. My hair was one of my best features. Strangers would come up to me and tell me they loved my hair. Now, I look like an alien from a sci fi movie. Each day is a challenge but there are cosmetic solutions.
I am looking into alternatives now because I have to get on with it. I heard about a new place opening in Beverly Hills called Lucinda Ellery. It actually originated in London. Anyone ever heard of them? -
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Hi Carol, I have found that just carrying on as normal is the best therapy for me. I promised myself that I would not allow FFA to stop me living my life to the full and I would not allow it to stop me doing what I want. I just got back from the Dominican Republic on holiday, I went in the sea and pool swimming - I just wore a buff on my head - I go out just the same socially with friends... It is a terrible shock to have this diagnosis and I think the slow loss of our hair means our coping strategies have to constantly shift and evolve as we lose more hair over time... It is a case of take one day at a time and be very very kind to ourselves. I am so pleased for you that you have a rescue dog. I am a big animal lover too and I rescued a little pet last year (a bird) who is now doing great.
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Permalink Reply by Maddy, California, U.S. on
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First, I wanted to say thank you all of your support, responses and ideas.
I am also currently using Clobestol twice a day, and taking turmeric as well...also trying to eat lots of anti-inflammatory foods. I am considering trying a gluten-free diet, but I don't know how hard that would be, especially when traveling. I am curious to know if anyone has tried to go gluten-free and had any positive results?
Debs - I did contact CARF and now have an appointment up at UCLA a week from Thursday, with Dr. Carolyn Goh (she also runs the support group in L.A.). She apparently has a lot of expertise in FFA. I guess it's worth seeing one more doctor to see what she has to say.
Celia - That is so interesting about the pneumococcal pneumonia. I too feel like my immune system was pushed to the brink with influenza (took me months to recover my lung capacity), and I was having horrible peri-menopausal periods, so losing lots of iron at that time. Then, I reintroduced the flu via the vaccine and I think that is what triggered mine. Anyway, I am a researcher myself (not in the medical field though), so I am always looking for answers. Also, I have seen two dermatologists now that have told me that hair transplants could work as long as I can get this inflammation down and be symptom free for 1-2 years without any medication...so I am still hoping for this at some point. While it is not 100% guaranteed with this condition, I am under the impression that it can work once the disease burns itself out. Maybe I am wrong, I don't know...maybe I just want some hope.
Pam W - I have heard of Lucinda Ellery and have looked at their website, but I really do not know much about them. They seem to get mixed reviews online. I would be interested to know any experiences with this system. It does sound great that you leave it on all the time and seems to look natural.
Carol - Thank you so much for sharing your story. I am glad you have your rescue dog, Maggie (I used to have an Irish Setter named Maggie). Pets are great...unconditional love.
Kath - I just bought my first headband yesterday...now I just need to figure out how to wear it.
Anyway, today I am trying not to dwell on things. I so appreciate all of you being here. It is so nice to know I can come here for understanding and support.
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Maddi, so great you are seeing Dr. Goh. I wanted to go to her support group last month, but couldn't get away. My doctor knows about her too. Please let me know what she says!
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Maddi, I am also from San Diego and very interested in what Dr. Goh says.
I also had severe stress, like most of us - sounds like a broken record. I have had
good luck with the Hydroxycloroquine. I think the ginger and tumeric might be helping
also. I am going to start taking 3 fish oil pills/daily for the inflammation - read
that they are good for anti-inflammationjin Dr Sears book - the anti-inflamation diet.Good luck to you and nice to have another member from California.
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Permalink Reply by Kay Ayala on
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Hi Everyone, I too am a lurker :) that has just been diagnosed with FFA. I will get my biopsy results on Thursday but my doc feels like this is what it is just by looking. I have lost about an inch of my hairline and my eyebrows over the years. I was so consumed with my eyebrows that I didn't notice my hairline at first. I asked doctor after doctor and they told me it was my thyroid or that I was just getting older (I'm 54). I did get the eyebrow tatoos, which I LOVE!!! I am so overwhelmed with the thoughts of losing my hair. It's consuming me right now. I ran out and got the turmeric and ginger and Rogaine right away and the doctor did prescribe a topical lotion. I haven't started the Rogaine as I don't know how to do it with the prescription lotion. I have read on others that they have gotten good results with the Rogaine. I guess I will find out more on Thursday when I go in for the biopsy results.
I live in the Houston area of Texas. Does anyone else live in Texas with FFA? Do y'all know of any doctors in this area that might specialize in FFA?
Thanks for all of the information that is shared on here. It really helps :)
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Hi, Kay. Welcome to the group. I would like to recommend that you go to the CARF website and register with them. It is free and you will get their newsletters, which contains a lot of good information about our disease. They can recommend a doctor in your area. It is really important that you are treated by someone who knows and has experience with this disease. Good luck on Thursday and let us know how things turn out.
Pam
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