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Permalink Reply by sallylwess on September 12, 2015 at 1:29pm

This is wonderful news.  I also teared up when I read what your doctor said about not losing your hair.  That is validation that is rare.  Bless you on your journey.  Thank you for this information.  

Permalink Reply by DragonandFox on September 20, 2015 at 10:24am

you're so sweet Sally!! 

Permalink Reply by JanS on September 15, 2015 at 3:58pm

I think your spreadsheet is a very good idea, but unsure whether it would be of any use for me to complete it as I'm in the UK?
Based on questions my doctor asked when I was diagnosed, I wonder whether it is worth adding lines related to hormone-related conditions or treatments, eg Hormone Replacement Therapy, Tamoxifen following surgery for breast cancer, Hysterectomy with or without removal of ovaries - and whether HRT taken afterwards.
Just as an aside, because I've lost hair on arms and legs (yay!) as well as hairline (boo!) it is my gut feeling that the trigger for FFA is more likely to be caused by an internal factor - maybe hormonal or stress-related - rather than any creams, shampoo ingredients etc. Many people on this forum are far more clued up about the condition than I am, being diagnosed only recently, but this is just my personal inkling.

Permalink Reply by Classical Anne in NC mountains on September 15, 2015 at 5:11pm

Hi, Jan -- you're absolutely right, FFA must have an internal trigger, and likely an autoimmune connection.  In other words, we were destined to develop it, no matter what we ate, or treatment we tried.  It just manifests at different levels once discovered, possibly related to stress, or diet, or who knows what . . .  Life is easier since I finally just accepted it.  

Permalink Reply by MJ on September 15, 2015 at 6:06pm

I think you are right Jan about this being an internal trigger but we have to wonder what thing or circumstance set the autoimmune issue in motion. After all this is a new disease. There must be something environmental contributing along with hormones and stress to set off the perfect storm.

Permalink Reply by DragonandFox on September 15, 2015 at 10:13pm

Obviously something "internal" triggered the auto immune disease, the question indeed among the Doctors is WHAT?!

Since up until NOW, the only research study that has been done was in Spain quite a few years ago, Doctors have little to go on.  Also, there's not been any major research in either the UK or the US because this has been a rare form of Alopecia rendering results from research not lucrative enough.

I'd say it's a pretty BIG thing when a Doctor from Columbia University says she saw 4 NEW people in just ONE week with this disease and that they are going to pursue funding for research.

It doesn't matter what country a person who suffers this disease is from and it doesn't matter what a Dr "thinks" is the cause.  They do NOT know! yet.

For people who are newly diagnosed all I can say is lucky you if you are not suffering any pain along with the hair loss. 

I have horrible scalp pain lately pretty much within 24 hours after I use the solution on my head. Seems the finasteride is stimulating regrowth, but the pain is unbearable.

Permalink Reply by JanS on September 16, 2015 at 3:09am

Yes, the Doctor who confirmed my FFA said she was seeing a huge increase in patients with the condition, and also said that she notices a lot of women in the street who seem to be suffering from it - maybe undiagnosed. I must say that I've seen a lot of receding hairlines since diagnosis that I probably wouldn't have paid any attention to previously.

My Dr also said (in April) that some research was being planned.
I later discovered, via this forum, that there is already some research taking place at Guys Hospital, London. I had hoped it would just be a matter of sending a saliva or blood prick test and completing a questionnaire, but it actually involves a visit to London, which I haven't got around to yet.
If anyone is interested in contacting the person undertaking this research (Dr Christos Tziotzios) his email address is christos.tziotzios@kcl.ac.uk.

I feel very sorry for anyone who has painful symptoms. I've so far lost body hair, eyebrows and nearly an inch from front hairline, but fortunately no pain so far. The only meds I've been prescribed to date is an antibiotic. I've bought some Regaine/Rogaine but haven't plucked up the courage to start using it due to mixed reports on here. I'm also in 'ostrich mode', thinking that if I try not to focus on the problem too much, it might go away ...

Permalink Reply by DragonandFox on September 20, 2015 at 10:37am

thanks for the info Jan.  

Yes. Dr Tziotzios's name is on the list for the CICATRICIAL ALOPECIA RESEARCH FOUNDATION

http://www.carfintl.org/trials-studies.php

christos.tziotzios@kcl.ac.uk.

However, sad to report, I desperately tried to contact the people at U Penn because that's the closest location to people in NY and the NY Metro area and if I tell you I got the most disheartening run around, that's putting it mildly.  what's so upsetting is my hopes were up and they basically told me to stop calling them there's nobody there conducting any studies on FFA.

I contacted the CICATRICIAL ALOPECIA RESEARCH FOUNDATION and they apologized and told me they'd look into it further and remove it, but, it's still there and it's been about 4 months or more.

So, like everything else, I lost trust in the word of professionals. The bottom line is it looks good for the CICATRICIAL ALOPECIA RESEARCH FOUNDATION to have a comprehensive list, even if it's inaccurate.

Permalink Reply by JanS on September 20, 2015 at 5:57pm

Thank you, Dragon&Fox, for the link to the information re Dr Tziotzios on the CARF's list of research studies. This is very interesting to me - and perhaps to others in the UK - as it appears that other UK clinics may soon be collaborating in that research.

I'm sorry that you have come up against a brick wall with regard to finding a study local to you, and sympathise with your frustration that the published information has not been corrected by CARF.

Let's hope that the momentum for further research projects gathers pace world-wide and that answers to the causes of FFA and successful treatments may soon follow.
Best wishes.

Permalink Reply by DragonandFox on December 29, 2015 at 8:08pm

for any new people interested in looking at the google chart I made you can click on the link.  if you'd like to  add your information just send me a request through the doc.  :) 

Permalink Reply by BBQueen on December 31, 2015 at 12:49pm

Dragon&Fox,

Thank you for all your posts and hard work with your chart. I believe that my nightmare with FFA started when I stopped taking birth control pills while under stress. I'm guessing that it started because of an extreme hormone shift. I've often wondered if diet coke had something to do with it since I drank a lot of it. I recently have been tested for PCOS and did not have it but I'm insulin resistant and have started Metformin. I'm wondering if it's made it worse or not. I've been so afraid of starting finasteride because I was trying for a baby that never came so, I'm going to start it today after ready your comments. I'm not expecting anything from it, but I'm so lost and beside myself I don't know what to do. I'm sorry we have this. I cry every single day! I'm getting a hair piece this week because I hate wearing hats to work.  :(

Permalink Reply by Lo on December 31, 2015 at 1:45pm

BBQueen - may I ask how much you have lost and how long you have had this?  Are you still able to "get away" with styling your own hair? All the best to you...

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