Comment

Comment by Susanne on February 6, 2013 at 9:02am

I lost my mom to idiopathic pulmonary fibrosis almost three years ago. This is an autoimmune disease with unknown origin. Hence, "idiopathic", which in case you haven't seen this word before, means we don't know where in the world this comes from. It is a progressive scarification of the lungs and ultimately suffocates you. My sister and I took care of her during her final months and it is a terrible way to go. Why am I mentioning this here? Because autoimmune diseases might be hereditary, not the actual disease, but the propensity toward autoimmune disease. My mom's father died of Parkinson's (autoimmune). It has not been shown 100% that FFA is an autoimmune disease, but many believe it is and it certainly acts like one. In any case, what if what I inherited from my mother was actually a gluten intolerance which makes one susceptible to autoimmunity. What if? Apparently, people often get several autoimmune disorders and believe me, I have no desire to get IPF. There is not going to be a funded study on gluten intolerance. There is no money to be made from that and only studies involving drugs get proper funding and often physician support. Until someone figures out what drugs will magically cure this mess, I'm going gluten free to see if that helps. It may not. It may be too late, but I've been seeing physical changes in response to this diet and it's been only 3 1/2 weeks. I don't want to sound like a broken record, but I wanted to explain why I'm going down this path without a medical doctor's directive. My dermatologist at UNC hospitals knows I'm doing this and because she is smart enough and humble enough to admit she doesn't know if that has any connection, she supports my decision to pursue alternative medical advice as long as it does no harm.

Comment by CJ- Christine from Ottawa Canada on February 5, 2013 at 10:55pm

Hi all, I just read the german article ( I`m german by background) and it is depressing. It sounds as though, based on this one case, where they tried everything including cyclosporine and thalidomide, the disease just carried on. There was a reference to our own Dr. Donovan`s research where there was some progress made with eyebrows via steroid injections.

I`m going to the American Academy of Dermatology meeting next month and hope that there will be some sessions there I can attend and see if there is anything new.... and more hopeful

Comment by PamW San Diego, CA, USA on February 5, 2013 at 8:41pm

Good luck, Heidi! Could you ask about the anti-fungal issue that was raised the other day? one of the ladies is being prescribed an anti fungal med. Never heard of that before. Tell the doc the whole group from continent to continent says thanks!

Comment by Heidi Short UK on February 5, 2013 at 1:10pm

Hi everyone I'm glad your day went well Debs, You look fab in your picture!I'm going to see my derm tomorrow is there any questions you would like me to ask. I think I will ask about diet, also the length of time I can safely be on my medications and if she thinks it is heriditary, oh and is it auto amune or not! Any other questions let me know.

Comment by Liz on February 5, 2013 at 10:01am

Ok. Thank you :o) xx

Comment by Jules UK on February 5, 2013 at 6:09am

Hi Liz. I saw Dr Harries himself. I think it was Celia who said that he likes to see FFA ladies because it's a particular interest of his. To be honest, he didn't say anything I hadn't already learnt on this forum but it's good to be "in the loop" if any research goes ahead.
Can I ask if anyone who's progressed to wigs is able to sleep in them? X

Comment by Liz on February 5, 2013 at 5:12am

Morning :o) I have an appointment with Dr Harries 'or one of his team' on 15th March. I am concerned that I might not get to see Dr Harries so I phoned the appointment line and have been told that I will get to see him unless there is an emergancy elsewhere. Has everyone who had an appointment with him managed to see him? Is there anything else I can do in advance so that I can get to see him?
Liz
xx

Comment by PJ - MN, USA on February 2, 2013 at 12:54am

Those of you that did Dr Harries survey/study, when will you hear back? Is it possible to share any of the questions with the rest of the group to give us somethings to think about and ask our own Dr's? I know someone mentioned there was a question on how much time spent in front of a computer.

Comment by PamW San Diego, CA, USA on February 1, 2013 at 8:09pm

Debs, I am so glad that your first day went well. I felt your anxiety. Everything should be easier and easier for you from here on out! I think you have the perfect face for a wig. I think I would look silly.

Rebecca, prednisone has side effects, too. I actually think Plaquenil is safer to take. Actos can be dangerous, if given in high doses and for a long duration of time. I take the minimal amount and will only take it for a few months.

Comment by Susanne on February 1, 2013 at 3:27pm

The more I read here, the more I understand that none of these dermatologists have any answers. Rebecca, where are you in Germany? I'm originally from the south near Stuttgart but spent last summer working in Berlin. I teach German here in the States.

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