Comment

Comment by MJ on March 4, 2014 at 4:29pm

Anne, I can relate to your sentiments. From an overall vanity perspective, I found having a mastectomy and reconstructed breast at age 46 easier to handle! Four years later, all that is a distant memory. My cancer is over and done with, but as you said, I don't know when FFA will end.

Comment by Liz on March 4, 2014 at 4:21pm

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

Comment by Anne Louise on March 4, 2014 at 3:58pm

Thank you for the welcome, ladies. As you both had said, it is not life threatening and I do try to remind myself of that. Yet I must say this has been much harder to cope with than having cancer while pregnant! I had a ton of support and there was a pretty clear cut plan and prognosis. With FFA there is so much uncertainty and no end in sight, and people don't send cards or casseroles when you are losing your hair. : )In some ways I think I'd rather lose whatever I'm going to lose and get it over with!

Comment by MJ on March 4, 2014 at 3:52pm

Hi Anne, I was dx in December and I am so grateful that I found this group. I cannot imagine going through this alone...so much helpfuk information! I am in such a better olace now in dealing with this than I was just a few months ago when diagnosed.
MJ

Comment by sallylwess on March 4, 2014 at 11:59am

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.  

Comment by Meme on March 4, 2014 at 11:57am

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   

Comment by Anne Louise on March 3, 2014 at 10:54pm

I was just diagnosed with FFA last week. I am only 46. I am feeling devastated and overwhelmed. My eyebrows have been vanishing for the past year and the working theory had been that it was due to my thyroid levels. I had papillary thyroid cancer-while pregnant-4 1/2 years ago and needed my thyroid removed. Anyway, like when I was diagnosed with cancer, I find myself wondering how on earth did I get this?!

From what I have read it appears that the cause of FFA is environmental, since it was only first recognized in 1994. My endocrinologist said there have been many more cases in the past 5 years. I wonder if plastics have anything to do with this. They do have estrogenic properties, and FFA is generally post menopausal, so I'm wondering if there is a hormonal environmental impact. This may sound crazy, but I'm wondering if my beloved Keurig is to blame! Very hot water pouring through acidic coffee in those plastic cups...sounds like great potential for leaching to me. They have become ubiquitous in just the past 5 years.

Thank you for this group, I've been reading posts for a while and thought I would now jump into the conversation.

Comment by Liz on March 2, 2014 at 4:27pm

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

x

Comment by Cathy (UK) on March 2, 2014 at 4:01pm

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. 

Comment by Maddy, California, U.S. on February 28, 2014 at 1:07pm

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.

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