Comment

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

Comment by PamW San Diego, CA, USA on July 29, 2012 at 11:49am

Plaquenil is an oral medication. My derm wants to start that, but I need to have an eye check first because one of the side effects (remote) is eye damage. Can anyone give me advice about scalp itching. Going out of what is left of my mind.

Comment by Heidi Short UK on July 29, 2012 at 4:08am

Sorry Christine I'm now on Betnovate which is a milder form of dermovate!!

Comment by Heidi Short UK on July 29, 2012 at 4:04am

Hi Christine I would love to come to Boston but I'm in England! but it will be great having an 'insider' going who can collect as much information and keep us infomed!!! would't it be great to have some really poitive news! I don't know if within your job role of running the skin disease organisation, if you know of any data base that we could put all our individual information on so there might be a pattern or something that could give us a clue to why this is happening or what can be done!!Back to your medication I haven't heard of plaquenil is it a type of steroid lotion? I'm now on dermovate which is milder than Betnovate that I was on.

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