Comment

Comment by PamW San Diego, CA, USA on July 30, 2012 at 9:24pm

In the CARF literature, they did say that it is possible to treat the inflammation and still have the hair loss. That is why they were looking into Actos to stop what is causing the hair loss (the PPARg gene going hay-wire). I am so excited because my wonderful dermatologist was able to reach a hair expert at UCLA. She said the gold standard was Plaquenil, which I am going to start as soon as I get my eye test done. I am also taking an acne strength antibiotic (doxy) and use Clobestasol (hair foam) as needed. Now the choice is whether or not to take Acots, too. Sandy, why does he think you only have a year of hair loss left? Karen, don't give up - meds aren't for everyone, but there could be a cosmetic solution that you could live with that will make you feel good. Tomorrow I am going to a wig expert who works with Alopecia patients. (I almost said victims instead of patient). I will report what I find out. Thank you so much for the support you have given me.

Comment by PamW San Diego, CA, USA on July 30, 2012 at 9:15pm

Comment by KarenGinny - Iowa, US on July 30, 2012 at 5:26pm

Hello all, it is so good to hear that others have the same fears, unfortunately though. I think coming to terms with hair loss is like facing death as in denial, anger, grieving, and finally acceptance. I have also faced the same thoughts with my son who has autism. I still have many times of saying "why me" when it comes to my son's condition, but I know he has his whole life ahead of him and surprises me every day. In the same way, I have times when I wonder why I have been burdened with this hair loss and other conditions - possible arthritis, thyroid problems, high blood pressure, and realize that while I can control some of it, I can't control it all. I still try to do my best to look good, and style my hair as best I can, put on a little make-up and go out, but I'm still very self-concious, looking to see if people are looking at me and wondering what's wrong with me. In our world, we are judged by our looks, and if we don't look "right" then we are dismissed. I never wanted to be the center of attention anyway, but especially not now. Anyway, I think all we can do is to try to have a positive attitude and look for help if we can find it. My doctor who diagnosed me didn't give me much hope, and I'm not currently under any treatment for FFA. I don't know if there is anything that would help. And since my insurance won't cover it, I probably can't afford it. I haven't looked into wigs yet and I'm afraid of spending money on treatments that don't work.

Comment by PamW San Diego, CA, USA on July 30, 2012 at 12:49pm

I totally agree with what you are saying - it is almost like you went in my head and took my thoughts out. I also thought about it a lot and my fears are not about what the people I love and know are thinking. My fears are more about people who don't know me; the stares, the looks, etc. Now my husband tells me "who cares?", but I know I do. So, I will get some hair so that I don't have insecure feelings and get on with life. Now, where do I find hair?

Comment by CJ- Christine from Ottawa Canada on July 30, 2012 at 12:38pm

HI all,
I want to weigh in on the ' at least its not cancer' conversation. I agree, its important to put things in perspective.. Indeed, its not cancer and we are not dying of this disease. However... and this is the common lament of skin patients of all types..is it does affect our lives and our perceptions of who we are and in some cases our ability to function as we would like. How we FEEL is actually important and by diminishing our feelings we diminish our right to them and that also makes us feel diminished - bad, guilty and shameful for even feeling this way. Shame is an insideous emotion - very damaging. I think it is important that we validate our feelings about this and don't negate them. Yes - its true that its not cancer, but we have a disease that will or already disfigures us.. that will make us the target of staring.. tough stuff in this appearance-conscious world. if we diminish it - 'its just a hair disease'- or 'its just a skin disease', then we de facto invite everyone else to diminish it and our feelings. We make ourselves less.
It is what it is. We are, to a large extent powerless and more so, because the condition is so rare. Line up all the negatives - pain ,itch, hair loss, being the subject of staring, medications that have debilitating and sometimes dangerous side effects, unknown comorbidities, misunderstanding, rare disease....let's validate our feelings and not be ashamed of them, and not let others suggest we should be ashamed of them.
A friend, when I told him of my diagnosis, said - "phew - I thought you were going to tell me something bad - like you had cancer." I told him that this was affecting me ...and he begrudgingly allowed me my right to these feelings. His point was - he doesn't care if I have hair or not. And that is another truth. Those who know us and love us will continue to do so. Those who are blinded by how weird we may look.. they lose out on getting to know us. Their loss.

Comment by PamW San Diego, CA, USA on July 30, 2012 at 9:49am

Celia, I am going to investigate "hair" this week. There is something called Invisible Hair that they can fix to your head for weeks at a tome, but I am hesitant to get involved with that because I heard that they want you to buy two pieces and you need to come back to them all the time so they want you to sign contracts. I thinkmsome of these people are like snake oil salesman who prey on the vulnerabilities of those who are losing their hair.

On another note, I cannot believe how much I am piecing together of somethings that I have suffered these last few months. For example, I get a red rash on my arms, whichnI thought was the sun. Anybody see little purple dots? I have them on my cheeks, too. That is the rash associated with LPP. I am beginning to worry less about the hair loss and more about not damaging my health withndrugs. Just don't want to look like Dolly Parton.

Comment by PamW San Diego, CA, USA on July 29, 2012 at 7:41pm

I know exactly what you mean. I know 3 people in the last stages of cancer and theyband their families are suffering. It makes me feel ashamed that I am fussing about hair. I will be so grateful if I come out of this with enough hair to manage a decent hair style. I also spent a lot of time on my appearance. Isn't it rich the difference one can make? You never know whatnlife can bring you. I wonder what life lesson this is going tomteach me. I just wish I could hear from someone who had a remission or was able to manage their symptoms.

Comment by PamW San Diego, CA, USA on July 29, 2012 at 4:58pm

Christine, I am sorry the Plaquenil isn't a solution for you. Is that a common side effect? I am an elementary school teacher and I can'tbjust excuse myself and go to the bathroom. I wish that there was somebody out there with some good news. Maybe you will hear something positive at the conference. Will you try cellcept or actos? Is it true that this lasts on average for 18 months? I am sorry to pepper you with questions, but I am one week into my diagnosis and I know more than my derm. I was so lucky to have found her because she recognized it from a case she saw in her residency. It sounds like so many people have suffered through the disease and an improper diagnosis.

Comment by CJ- Christine from Ottawa Canada on July 29, 2012 at 3:06pm

Comment by CJ- Christine from Ottawa Canada on July 29, 2012 at 12:38pm

Pam _ I'm about to get off plaquenil, because the stomach side effects are not sustainable... I'm not sure about the next systemic-- also bad side effects. On scalp itching.. I have no idea - the clobetasol lotion helps me. the itching is indeed crazy making as I feel that if I scratch or rub, I'm losing another hair. I've been told that isn't the case, but you can't help feeling like it is anyway.
Heidi - THAT is a brilliant idea. The Canadian Skin Patient Alliance ( www.canadianskin.ca)doesn't do anything like that currently, but perhaps its something CARF could take on, and if not CARF, then I'm thinking we might interest a number of Cicatricial Alopecia researchers to take this on in collaboration with a few of us.... how hard could it be?. Perhaps a research grant could fund the setting up of a self-reporting data base - online... it could be a model for all kinds of rare skin diseases, where treatment paradigms vary. We could launch it on facebook and create a website for it... By we, I mean a core group of FFA patients... or CARF.
With your permission, I'll float the idea when I'm at the conference. I'm connected with two of the Cicatricial Alopecia specialists in Canada. I expect each of us knows one of the experts in their country.IF we all think this is worthwhile we might each try and talk with our local expert and ask what we might include in such a registry that would be helpful.

ALL THAT SAID, I expect that optimal treatment for FFA is going to vary from person to person. From my work in the area of skin diseases, I've learned that there is no one 'best' medication for everyone with a given disease. Presumably the treatments that are currently being used for FFA have worked for some people. I think that the more we can find what is working for MOST people most of the time.. maybe it leads to greater understanding and better more targeted treatments.
I could go on and on.. what do the rest of you think?
Christine

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