I too, have not been born by C section nor have had any digestive issues to date.

MJ,  I live in the US in Iowa and would love to go to a conference like that, but don't think I could afford it right now. Even if I could make the 8-10 hour drive, the hotel and conference fee would cost a lot.  You could maybe go to the carfintl.org website and see if there is a way to send a message with your questions.   I am currently seeing a new dermatologist and taking Methotrexate to help calm down my itchy dry scalp. It might be helping but too soon to really know. My hair loss right now seems to be stopped - has been for a while now, but still have the irritated itchy extremely dry scalp and no new hair growth. I just do my best to cover up the bald areas.   On the topic of c-sections, I was not born c-section, but my two sons were. I've read about leaky-gut syndrome and how it can affect children/adults with autism. I have a 14 yr old son who has autism, but he doesn't really have any digestive issues, other than being a very picky eater. I also have a 12 yr old son who is neuro-typical.   Sometimes I wonder if my auto-immune issues have anything to do with his autism, but don't think I'll ever be able to answer that question?? 

Hi Celia :o)

I have to work on the 22nd. I work every Saturday at the moment. Have a lovely time. It would be lovely to meet you all one day. Debs. I've had a lifetime of gastrointestinal problems starting from when I was a small child. My mum is the same. Jules, I still have the hair which grew back on my right temple. Unfortunately I seem to have lost more on my left temple though. I've knitted myself a headband using soft bamboo wool which covers my hair loss. It's such lovely soft wool that my head doesn't feel hot or irritated even after wearing it all day. I shall knit more! xx

Hi Liz - sorry you can't make it this time - we shall hopefully get together again in the summer. x

I am always interested in how much those of us whom suffer from FFA try to piece together a common thread of medical and personal histories that might explain our disease.  I make notes and keep them in a file on my computer.  I am also interested to find that few doctors care to think about these common characteristics, nor do they seem care about searching for answers.  I am thankful that the researchers who care about those of us who suffer from FFA do care and are also collecting this data.

I have had a history of allergies.  I have many drug intolerances and allergies.  I was on Nexium for way too many years for acid reflux.  I was also on a heart arrhythmia drug called flecainide when I first noticed significant hair loss.  I have Hashimoto's Thyroiditis.  My doctor suspects that I have a leaky gut syndrome since I am continually fighting low ferritin level and low iron saturation levels.  

I currently am only taking thyroid medicines, an allergy medication, and Vitamin B12 and Biotin.  I also use Clobetasol on as needed basis.  I use it when my scalp is red or inflamed.  I think the hair loss is slight these days.  I was recently prescribed Avodart by a respected dermatologist.  I could not even believe that he prescribed this medication for FFA.  I refused to take it.  I am trying healthy eating, stress relief by doing restorative yoga, and I am trying not to get too down about the loss of my hair.  

I have struggled with my ferratin level for years as well! No allergies though, at least not that I know of.

This is really weird as I have to have a repeat blood test as my ferritin levels are very high! Saw my dermatologist yesterday and she is suggesting I try Mycophenylate mofetil an auto immune suppressant. Got to have more blood tests first though. Has any one tried these? Jules I'm interested to hear about the FFA steering group. Tell me more about it. I was by contrast a very skinny child when younger and late to develop. They said I had a high metabolic rate. What a strange bunch we all are!!

I wasn't born by C-section but have a leaky gut and other digestive issues.  In fact, I'm feeling really sorry for myself just now because I had a bout of ascending cholangitis (blockage of the bile ducts) yesterday and still feel pretty rotten today.  However, I had my hair cut like Julie Walters last week so notwithstanding the gut problems, I decided to embrace my extremely high forehead and go for a less-mumsy hairstyle!!

Very best wishes to everyone

Jean

Jules, it is great news that you have been invitied to the steering group.

I've been reading the recent posts with interest. I wasn't born by C-section. I agree with MJ that stress is a trigger. In my case I believe my immune system is being placed constantly under stress from working nights over a long period. It is my choice to work nights, as without going into any detail, I can cope better with my job which in itself is extremely stressful.  I have a year left before I can retire.

I had weight issues in my teens and twenties and spent years on crash diets. I was never actually overweight but had a poor body image. Managed to conquer my eating problems after children came along and I had them to focus on rather than myself.

I have suffered from IBS for years which seems to be triggered by gluten. I have medication for this but don't need to take it on a regular basis, only when I have a flare-up. Also I have eczema, though fortunately it's mild and controlled by hydrocortisone cream. In the past I have had thinning hair caused by low ferritin levels which were corrected by taking daily ferrograd C. Once my ferritin levels improved, my hair grew back - this was about ten years ago. Then 18 months ago I developed FFA. Like Sally I am trying to stay possitive, enjoy my life, not get too obsessed about my hair loss, eat healthily and exercise as much as I can. When I want to look nice I can wear my wig and feel better about myself.

I also work nights in a boarding school and believe that stress is a great trigger for me as well. Things have got so much worse during the last 18 months which coincides with my mother dying and a number of personal matters.

Clarie, I'm sorry about your mom. That is also my case. My mom died 18 months ago as well, and it was right after that very stressful year that I had my worst bout with FFA. It sounds like stress is a major trigger for a lot of us.

Claire, ive just seen your comment about mycophenolate mofetil.  This is the medication that I have been on since February 2013. I started on a lower dose but was increased to 1g twice daily at my last appointment to give it a last go, I think, before giving up on it.  I have an appointment with my dermatologist, Dr Farrant at Brighton hospital, on Thursday so I will let you know the outcome. Not sure he will continue with it though as my hair is still receding and scalp is very itchy. 

Hi Cathy. I would be interested to know how you get on with Dr Farrant. I've messaged you :o)

x

Welcome to the group Anne. I have only been a member myself for about a month but these ladies have been very supportive and have given me so much information to think about.  I have had FFA for over 10 years now but was not diagnosed until 2 weeks ago by Dr Chris at Guy’s hospital.

I believe my FFA is hereditary from my father’s side of the family.  But who knows. I know this must come as a blow to you; especially after all you have been through. My FFA is a always there as a constant reminder, but my thinking is that if I have to have a medical problem then at least I haven’t got one that causes me to be unwell or in physical pain. Just my way of looking at it and trying to get through it.

Take care.

meme   

Welcome to the group Anne.  I have learned so much from the wonderful ladies on this forum.  I am always learning something new.  This diagnosis is a devastating one, but as Meme said, it is not life threatening.  For that I am very thankful.  Take care of yourself, Anne.  

Hi Anne. Welcome to the group. I'm 42 and have had a diagnosis for the past 18 months. My mum also has FFA xx

Anne - sorry you too have needed to join us.  On a practical note - have you thought about having your eyebrows tattooed on - it makes such a difference rather than having to pencil them in.  Do a bit of research and find a really efficient person to go to - it's worth it.  I have chosen not to tell friends about my FFA as I didn't want anyone to feel sorry for me or to constantly think about my hair when they see me.  I just try to hide it with styling and will do that as long as I can.  I remember years ago a friend referring to a woman in the town as - 'you know who I mean - she wears a wig.'  I never thought about that at the time but I certainly do now ! I don't want FFA to be the way I am viewed so - it's under wraps !  Something for you to think about. x

Hi Anne welcome to the group.  It's easier dealing with FFA when you have support.  You"ll find that here.  I'm trying to find a place to get my eyebrows done.  I've had steroid injections, and I've used latisse and rogaine with no luck.  Good luck to you.

My dermatologist told me that my eyebrows would come back but not my hair.  It"s been over a year and i haven't had much luck.  A few hairs sprouted after four rounds of steroid injections but they've fallen out and the indentations from the shots haven't filled in yet.  Latisse is helping to bring back my eyelashes.

Anne, welcome to our group.  I'm sorry to hear about your diagnosis.  You will find lots of support & information here.   Regarding your eyebrows:  There's a product called SmartBrow that I learned about on this site.  You can find it online at DermStore.  It's pricey -- $29.99, but it does an unbelievable job thickening up your eyebrows.  It's kind of like mascara with a tiny brush to fill in bare areas and a mascara wand to thicken up your existing eyebrows.  It's also waterproof, which is perfect for swimming.  I find that the colors run a little dark, so you may want to order a shade lighter than normal.  (I have medium brown hair & order the blonde color.)  Shipping is free with this item, and you should be able to find a coupon code online for 20% off your first order.  Good luck.

Hi Anne, Just wanted to pipe in here. I have used Latisse on my brows ever since I started to notice they were thinning...which was about 9 years ago. So far, I still have my brows, but I use it every night on both my brows and lashes. Ironically, people actually comment on how long my eyelashes are...they were almost non-existent before I started the Latisse. Also, your comment about having electrolysis years ago caught my attention. Similarly, my bangs used to be SO thick that I had to thin them out every week throughout my 20s and 30s...now I struggle to have enough hair to hide my receding hairline :(. Yeah, it's pretty depressing, but I am trying really hard not to let it run my life. I did buy a partial hairpiece and have it at the ready when I feel I just can't hide it any more. I'm having surgery tomorrow and am scared to death that the rest of my hair will fall out! Anyway, welcome and I'm sorry you got the FFA diagnosis, but this forum is a great help. Hang in there.

Does anyone know if any of this stuff is available on prescription? I have seen some eyelash serum available on line and I am thinking of buying some. it all seems so hit and miss as to what to do. 

I started using 5% Rogaine foam eyebrows as well as my head as soon as I was diagnosed with ffa almost a year ago.   My eyebrows have gotten thinner over the years, but my doctor said that they were not affected by the ffa yet.  My eyebrows and eyelashes have both gotten thicker as a result.  I don't use the Rogaine around my eyes, but my eyelashes have gotten so long that I now have a problem with my mascara leaving dots all around my eyes before it dries.  I did have an initial shed a couple weeks after starting Rogaine, but I never noticed losing any eyebrows. 

I have had good luck with using Elidel cream on my brows. On was nearly gone but now I just use a little eye shadow to fill in. The powder works better for me tan a pencil.

I have used powder, but it doesn't seem to cover the bare areas as well as the SmartBrow.  The SmartBrow is much like mascara which thickens and stays in place until you take it off with the makeup remover (included with purchase).  It has a tiny brush on one side to fill in bare areas and a mascara-type wand to coat the entire brow area on the other end.  However, as much as I like the product, I've only purchased it twice because it's so darn expensive.  One tube is $29.95, and it lasts only about 6-8 weeks.   

I use SmartBrow as well.  I think it is the best product for eyelashes.  I have one eyebrow that is more thinned than the other one.  So, I just use the SmartBrow and then add a little powder to the thinner eyebrow.  This works great because the gel is still a little wet and it sticks very well and stays in place (I work out a lot and can even wipe the sweat and it stays on).  I use a very thin brush for the powder so it looks very natural. 

It does take a few tries to get the hang of applying SmartBrow.  You want to make sure you get it right while it's still wet because it won't blend after it dries.    You can go online to see a demonstration on how to apply it.

I meant "eyebrows" in my last post.  Sorry!  :-\