Replies to This Discussion

Permalink Reply by kastababy on July 30, 2009 at 6:31am

Good morning Portia,

I see that nobody has jumped in yet to tell you the "ugly" (which is all relative) truth about alopecia. In case your doctor either doesn't know or doesn't care to tell you, here are some truisms about alopecia.

Truth: Alopecia is VERY unpredictable. It may be a temporary condition for you; on the other hand, it may become something that you have to live with for the rest of your life. The easiest way to deal with this is to take alopecia one day at a time. I know if you're newly diagnosed it's easier said than done, but I really do wish that someone would have told me this as a child when I was first diagnosed -- it would have made being an adult with alopecia easier.

Truth: Alopecia will irritate your scalp from time to time, and there are some treatments that are painful. The truth of the matter is that when your immune system is fighting a foreign object in your body (like it is mistakenly attacking your hair), it will cause some irritation and inflammation. Also, too many treatments simultaneously will also cause irritation if you're not used to it. My advice is to be careful.

I hope this information is helpful to you. One other note: If your dermatologist insists that your condition is temporary, I would strongly recommend finding another doctor -- the worst thing a doctor can do to you is give you a false sense of hope. While we alopecians always hope for our hair to permanently return, and while hope and a positive outlook are positively essential to whole body healing, a healthy dose of realism is just as beneficial.

In regard to speaking to a professional, I would recommend speaking to your pastor, or a trusted social worker, or even a psychologist or psychiatrist that specializes in self-esteem and coping issues. I saw a social worker when my father passed away several years ago who was absolutely phenomenal; her work with me during grief counseling came in very handy when I started having issues living with my alopecia.

Have a great day!

Permalink Reply by Portia Mason on July 30, 2009 at 1:03pm

Thanks. I guess before I go to my next appointment, I need to find another Dermatoligst to give me the cold hard truth of this matter. I have had this for a long time. But, never knew what this was. Couldn't understand why my hair was not growing back in certain spots in my scalp. And, two, No matter how I try, I comb it a certain way and still have a little bit of a spot showing. Still that way now that I kee it real short. Almost like a man's cut. Its so short. I am able to live with but it is unbearable that one I had to renew a dialaride card since I am blind and they made a mistake and put male on the paperwork. And, it was embarrassing to me. And, I can't really wear wigs in this heat since I sweat a lot. I have a lot of work ahead of me. I didn't really do anything about my hair loss till Mar of this year. Now that its july going on aug, I feel unsure this stuff they keep injecting in to me is going to work. Also, he started with injections in my hip area then last month the scalp injections. I continue to use the solution. He gave me some sample of some other stuff that was supposed to help stimulate the groth faster. My insurance won't cover it so ran out sooner. And, went back to the solution I originally started with. Portia

Permalink Reply by myem on July 30, 2009 at 1:41pm

Portia,
There are so much information out there but not all in the same place. The book "Alopecia Areata - Understanding and Coping with Hair Loss" written by Wendy Thompson and Dr. Jerry Shapiro will give you all the facts and treatments about AA. You can borrow it from the library. It helps to have all the info. when talking to your doctor. Even it was published in 1996, treatments basically remain the same.
Hope this help.
Best of luck to you.
Myem

Permalink Reply by Portia Mason on July 30, 2009 at 2:09pm

Thanks so much for the information on the book. I will look in to finding that one. Portia

Permalink Reply by Deborah Gay Smith on August 7, 2009 at 1:51am

Portia,
I also have the same condition as you do. My doctor had told me that sometimes its caused by stress,but no one knows for sure. Am also going to look for the book that was suggested.
I had started on injections but that didn't seem to help so I had changed Doctors. I have been putting some solution (which was made up in various strengths by tests ,to see which solution did not affect my skin)hen i hadput a little bit my bald spots, but even that has not help. I still have a lot of hair falling out in the shower and also am shedding...Its no fun. We are all here for the same reason and thats support for one another:). Hope we can be friends.:) Deborah.

Permalink Reply by kastababy on August 7, 2009 at 3:43am

Ok. I am going to emphasize this point once again, because apparently there is a giant misperception about alopecia in the medical community which needs to be addressed once and for all:

STRESS IS NOT THE ROOT CAUSE OF ALOPECIA -- IT CAN BE A TRIGGER, BUT IT IS NOT THE CAUSE!!!!

Any doctor that tells you that stress is causing your alopecia needs to check his facts, because if stress were the cause, then getting rid of the stress would get rid of the alopecia -- and in 99.999% of all alopecia cases worldwide, that has NOT -- repeat -- NOT happened!!

It simply infuriates me to hear so many of our alopecian beloved being outright lied to by their doctors because they won't take the extra time to do a little research on their own about the condition -- and we wonder why the American health care system is so broken.

If you get a doctor that insisits that AA is caused by stress and that it is a temporary condition, I strongly suggest you find another doctor that actually knows what they are talking about. Just a little friendly advice from someone who has zero tolerance for incompetence.

Permalink Reply by Hannah on August 7, 2009 at 6:58pm

Yeah, when I was little my mom took me to a doctor who said I have a "yeast imbalance" whatever that means! And that I was too stressed out... I was 4 lol!

Permalink Reply by Deborah Gay Smith on August 10, 2009 at 1:23pm

yes youre right kastababy! it is caused my a tigger of stress. I was going to backtract my little note, but since you've done it for me I won't...Thank you again for clearing it up.