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Comment by CJ- Christine from Ottawa Canada on August 13, 2012 at 11:57am

HI all,
I went to CARF this weekend and it was good. I'm a bit numb.. its hard to be in denial when you are surrounded by others with your disease. There were lots of women with FFA,a nd the news was that the docs are seeing more and more of us . they wonder if there is an environmental link... it seems more prevalent in some parts of the world than others.. or maybe people in other parts simply aren't bothered as much as we are.. who knows
It also seemed to me that there are two categories of people with FFA - those who are trying to fight it with whatever they can ,and those who have either given up and have had their disease 'burn itself out' - their words, not mine- and refuse to take anymore medications for it, except those to comfort the pain or itch. most of those are using hairpieces or wigs. there is alot of emotion around this disease,and many are finding help in local support groups that are cropping up. two others and I are starting up a group in Canada at the Skin Matters conference in Toronto in October, where we'll invite hair expert Dr. Jeff Donovan to speak to us about research as well.
one woma talked about doing a medicine life chart... documenting all the medications she'd taken in her life. Others talked about diet and environment. The doctors there hypothesized that there might be some environmental trigger, but also a genetic factor There are those who think that the way to find better treatment or a cure is via finding what 'causes' it and others who look to the biochemical processes involved and studying them to find a cure or treatments.
I left with mixed feelings. There are others like me, and there are some very dedicated people working on it, but I didn't sense we were anywhere close to finding a cure. There was laughter and tears and sometimes both at once. it was very good to be face to face with some lovely people.
I was also struck by how our experience is so similar to that of other patients with skin diseases.
I tried on a wig, I learned about hair pieces and weaves and met a woman who makes her own wigs - truly cool... I wasn't really ready to face that stuff yet... I'm a bit numb today.
that's my initial report. I'm sure I'll dredge up more int he coming days.

Comment by PamW San Diego, CA, USA on August 12, 2012 at 9:19pm

Happy Sunday. I was wondering if anyone went to the CARF Conference this weekend and if anyone has any news to to report?

Carol Sue, I have a question about Actos. I know you said that you came off because of side effects, but did you think it helped you?

Comment by PamW San Diego, CA, USA on August 9, 2012 at 12:12pm

Here is a link for the product. My stylist is ordering it from this website and then we are going to cut and trim it so that it fits my haircut and hair. It doesn't feel any different than wearing a head band. Watch the product video.

http://www.wigs.com/product_info.php?products_id=4506

Comment by PamW San Diego, CA, USA on August 8, 2012 at 10:21pm

Sandy, I added my profile pic (before FFA). Anyway, before I even had a diagnosis my friend recommended Bosley Shampoo. I bought a trial size to try it and it really does add volume and body to my hair. It is very expensive so I bought a trial 30-day size first at a local spa/salon. I liked it and found it on Amazon at a much better price. They have a formula for color treated and non-color treated. I will post wiglet pics next week (after stitches come out from the skin cancer).

My friends who went with me today said that the wiglet is hardly detectable. I will know soon enough I guess. It gives me just enough volume at the temples and bang area where I am thinning. I don't want to wait for it to become an issue so I am taking care of business now.

Comment by PamW San Diego, CA, USA on August 8, 2012 at 5:27pm

Hi everyone. I went back to the wig stylistnand settled on bangs and fringe in human hair. I am going to go back to school wearing it so hopefully no one will even notice. The color had to be ordered for me and it will be cut and styled for my head. I will post a photo next week. I had a basal cell skin cancer removed earlier this week, so I am a bit of a mess. Stitches will be out on Tuesday. Thismhas been such a challenging week!

I thought the woman shown in the article was a model. I didn't think it was the actual patient.

My dermatologist is still thinking that she could save my hairline if shevcan control the inflammation. Everything I read says the hair loss can still happen even if they can control the inflammation. I am on Plaquenil and Doxy and see no difference. My scalp is still itchy. I am definitely more comfortable shampooing everyday, even though I know that it isn't good for your hair. Doc says it can take months for the drugs to get into your system. It seems as if I am the only one of us who is being treated with drugs. I will keep you posted on my wiglet progress.

Comment by Heidi Short UK on August 8, 2012 at 2:48pm

Celia I did read the article it was interesting, i wrote to Dr harries at the weekend. i don't know if he will reply , I hope so! Karen, my hair line just looks like a mans receeding hair line. My fringe covers it at the moment, but it is getting thinner every day, not sure how long I can hide it for.The rest of my hair is growing normally I still have to colour the grey roots every 4-6 weeks!

Comment by KarenGinny - Iowa, US on August 4, 2012 at 12:46pm

I feel like my hair loss has slowed down but not probably done. I haven't had the red itchy inflammation in my scalp in a while now, but it still is very dry and I use a medicated shampoo to help control that. My hair texture has changed somewhat thought, it used to be very curly and thick, but now is thinner and flatter and frizzy on the one side that has had more hair loss, but more normal on the other side. Very strange! I haven't lost any other body hair other than a patch on one arm. I wouldn't mind not having to shave my legs! My remaining hair seems to still growing at a normal pace. My scalp is strange in that I have a small strip of hair growing at the front hairline and temples and then the bald part starts and goes about 2 - 3 inches back. That is the hallmark of the "Frontal fibrosing" type of alopecia according to my doctor. Is the same with the rest of you? I'm not doing any treatment for it since my dr said it was unlikely to grow back. I guess I should at least be happy that I don't have Universalis and still have some hair left. I feel also like I have a secret to hide and don't want anyone to know about. My husband & kids are supportive, it's just when I'm out in public or with acquaintences who I haven't shared this with that I'm uneasy. I know people can probably see the bald shiny skin under my bangs but I don't know what to do about it other than wear a hat. I'm not really ready for a wig or partial wig, or head scarves. That would just call more attention to myself. I can wear a hat outside it it's windy or sunny, but inside it would just look weird! and this summer has been so hot that I sweat like crazy and my hair just looks a mess anyway!! I can't wait for fall and cooler temps!!

Comment by PamW San Diego, CA, USA on August 3, 2012 at 6:58pm

I hope he answers you. I started Plaquenil this morning. The derm made it sound like if you can get the inflammation under control you can prevent further hair loss. However, everything I read said that even if you could control the inflammation, the hair loss can continue. That doesn't actually make sense -- why take all the meds then? I would just like to hear from one doctor that it is possible to prevent hair loss. I am like you, I am in the best condition in my life, with the least stress. The only thing now that is causing stress is when I do my hair. I am hoping that one day I will get to look in the mirror again and not think about going bald. Even though I may not look different on the outside, I feel like I have a secret on the inside that keeps me from being like everyone else. I look at everybody's hairline now. No one is safe.

Comment by Heidi Short UK on August 3, 2012 at 6:44pm

Pam to answer your question, the only changes to my skin is the lack of hair! I haven't needed to remove any hair from my legs since xmas, so there are some benifits! I still need to do under my arms though! My head and my hands seem to be hypersensitive, If I knock or catch them it is very painfull, but other than that I don't get an overly itchy scalp or pain any where, thats the ridiculous thing I am probably the fittest I've ever been since a teenager, I'm at the least stressfull time of my life and now my hair is falling ou,how does that work!
Hope the hair styling goes well next Thursday.
Sandy my doctor said to me that it will burn itself out but he didn't give me any exact time scale just a few years. I'm sending a letter to a doctor who is reseaching FFA so hopefully he might come back with something more positive,I'll keep you all posted!

Comment by PamW San Diego, CA, USA on August 2, 2012 at 6:06pm

My derm called and the results of my baseline eye test are normal so I am good to go with starting plaquenil. She is not crazy about taking doxy, plaquenil and actos all at the same time.She said right now the gold standard for treating the diseasenis plaquenil. She thought actos was kind of experimental. She said that maybe in ten years it will be what is prescribed, but there just isn't evidence yet. So doxy and plaquenil it is.

Wiglet purchase and customizing is scheduled for next Thursday. Taking a few friends with me.

I have a new question for the club: Did anybody notice changes to their skin?

Pam


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