Replies to This Discussion

Permalink Reply by PamW San Diego, CA, USA on March 29, 2013 at 9:13am

Hi, Ammee. Welcome to the group. I am sorry you are experiencing hair loss for any reason! I think the only way to be certain is to have a biopsy. Also, our eyebrows are involved, which was the real "tip-off" for my doctor. Good luck to you and don't be afraid to advocate for yourself. If your doctor doesn't like it, it's time for a new doctor.

Permalink Reply by AC from CA, USA on March 29, 2013 at 5:17pm

Hi Ammie,

My name is Aimee and I have recently confirmed that I have FFA. It isn't the best thing that's ever happened to me, but I am working to remember with every sad thought about this new reality that it is also not the worst thing that has ever happened to me, nor is it the worst that could be.

I'm from CA, but being in NC, you may be interested in this resource:

Wake Forest Baptist Health in Winston-Salem, NC, the U.S., is looking for people with FFA to participate in a study.

Here is a link http://www.wakehealth.edu/BeInvolved/StudyInfo.aspx?study=IRB000228...(Hair%20Loss).

Best of luck,

A

Permalink Reply by ammie on March 30, 2013 at 12:04am

Thank you all so much for kind words and advice. I go to the derm the second week in April. I will ask for a scalp biopsy. I need to be sure in order to get the best treatment. I appreciate the support very much.

Happy weekend.

Permalink Reply by Debs on March 30, 2013 at 4:11am

Hello Ammie,
Welcome to the group, I also had problems getting an accurate diagnosis, my GP knew it was alopecia but not what type, I was diagnosed by a trichologist at the Belgravia Clinic in London, UK. My first derm was very nice but didnt treat the FFA, I got info from Celia who started this group, on another derm that specialises in FFA and am now being treated with hydroxychloroquine sulphate by him. You do have to punt around to find a doctor that has knowledge of FFA I am afraid.

I would definately agree with Celia's words, I have told my mum, brother and only my very closest friends, it is not a secret that I have FFA but it is much easier to cope with if you don't have lots of peoople asking you questions all the time about your hair loss. That is just my personal opinion and of course other people will have their own coping strategy.

Happy Easter to you

Debs

Permalink Reply by Robyn, Melb. Australia on April 1, 2013 at 6:38pm

Hi Ammie,
I join the other ladies in saying how sorry I am to hear you have FFA, particularly as you are so young. I am 59, live in Melbourne Australia, and was diagnosed 2 yrs ago. I have been taking a drug called Plaquenil for the past 2 yrs since being diagnosed and it appears to have possibly slowed FFA down as my hair loss doesn't seem as rapid as what others have reported on this site. At this stage my eyebrows haven't been affected, but as we have all discussed nothing can necessarily be discounted with this condition - so I monitor my eyebrows for any signs..... Try to get the skin biopsy - my specialist did that and was able to confirm very early it was FFA. She tells me it was good I had it diagnosed early so we could start the treatment at early onset.
I am seeing her again in May and will let you all know if she has any recent information that is useful.
I wish you all the best Ammie and hope you manage to see the right doctor who will help you.
Best wishes Robyn

Permalink Reply by ammie on April 3, 2013 at 7:24am

Thanks, Debs and Ryan. I appreciate everyone's kind words and insight. You all have been wonderful! Are there any questions I should ask the derm? I go on Monday and want to be prepared. Also I noticed that I have had some loss underneath. It is slight but devastating to me. I guess it is because I fear ending up like those women I see during a Google image search. I need to stop looking at those. Hope everyone is having a great week.

Permalink Reply by ammie on June 25, 2013 at 7:02am

Hi everyone,

I wanted to give all a brief update. I have suspended treatment for now because I learned that I am pregnant. I plan to meet with another derm once I am past the breastfeeding stage.

My hairloss has been really slow and the baby has taken priority of course so I don't mind one bit putting this aside while I prepare for my new little person.

Before getting pregnant I had been on clobetasol and had one single dose of a steroid shot. I had no new regrowth and the shot caused a small dent in my forehead where it was injected.

Anyone else go through this?

At the time, I was being treated for alopecia areata which I don't think I have. So once baby gets settled I will start shopping for another doctor.

My mom has hairloss in the same pattern. She is 71. She lost her hair brows first then her hairline. My eyebrows are still enact but my hairline is taking a beating.

My mom says her doctors haven't been concerned about her hairloss because it has been slight but it is clear that is not female pattern baldness. I think sometimes doctors are quick to over look things they deem unimportant though to us it is devastating.

Permalink Reply by ammie on June 25, 2013 at 7:18am

Thank you so much, Rebecca.

Permalink Reply by Debs on June 25, 2013 at 11:41am

Ammie, congratulations on your lovely news. I hope you are keeping well during your pregnancy, look after yourself. So pleased you have this happy event to look fowards to. Debs xxxxxx

Permalink Reply by ammie on June 26, 2013 at 6:36am

Thank you, Debs!

Permalink Reply by Celia on July 2, 2013 at 9:14am

Congratulations Aimie ! That is wonderful news.
Focus on your pregnancy and hopefully this will give you courage and determination !
Is it my imagination or are we seeing more pre-menopausal women with FFA ?
Please tell me how to spell your name ! There are a few options on the screen ! XX

Permalink Reply by ammie on July 2, 2013 at 9:24am

Thank you, Celia!

My name is Ammie. Sometimes when I type too fast I accidentally add an extra "i". It doesn't help that I am mostly typing on a cell phone.

Take care!

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