Hello there. I am wanting to hear some of you or your child's experiences with doctors and nurses that you are willing to share for an upcoming dermatology conference I will be speaking at. Please share your good and bad experiences, what your expectations were when you made your appointment, how long it took to see a your doctor or specialist if that applies, and anything else you wish. Thank you in advance. I appreciate all your help.
I went to a dermatologist when it got worse. Steroids, ultraviolet, infra red, had it all. He told me the reality is that there was very little research being done because people don't die from alopecia and I should just keep my eyes and ears open for developments in research and treatment successes. Now I am a retired University Librarian and still hoping. But mostly it is something I have left in my rear view mirror.
Tandelor - Thank you for following up. I appreciate all you have shared.
Thank you for saying you appreciated the honesty. Even though it wasn't what you wanted to hear, at least there was that. I'm shocked your dermatologist said that though, especially considering his specialty. When was this, by the way?
Rea - Thank you for sharing your experience. I'm sorry it was such a poor one. It's good to hear you saw a Naturopath, and like you said - who knows. It may have been timing/luck. I have no idea what prompted regrowth for me after 7 years of totalis, but it happened spontaneously (without medication, change of diet...). So glad you have found a more relaxing place with your all of the great resources that are available. Thank you again for sharing.
SO happy to hear you are keeping this discussion alive by speaking at the conference. If it were up to me, I would tell them to stop taking appointments for alopecia patients knowing there really is nothing they can do. At this point, it is unethical to continue giving alopecia patients hope by medicating them with temporary fixes. Tell them to put their time into research as everyone who has done their due diligence knows there is no cure.
Kal - Thank you for your for your heartfelt opinion about this. I agree, our autoimmune disease should be treated just as seriously as others.
Thank you Patty. I appreciate your advice.
Lucy - Thank you for your insight. I'm glad you are finding your way through this with a helpful GP and that you are having more good days than bad. If you don't mind saying, has your GP suggested other resources available to you, local support groups, Alopecia UK... - or are most of the suggestions treatment related?