Comment by Dorothy on July 17, 2013 at 9:11pm

I don't even know if I have ever even accepted the disease itself, I have accepted that I have this AU to deal with, I have wigs to buy (my choice), I will never go without wearing a wig. I now am a widow and it is highly unlikely that I will feel comfortable enough to be with a man even as a friend because of this AU, I was already married when the AU started otherwise I might not have ever been married, so I was lucky enough to have had a wonderful husband for 38 years. I have never given up on a cure even tho I have been told that the longer I go with having AU even if they find a cure the less likely it is I will respond to the cure, it has been over 40 yrs now, so in my case, quite doubtful, but I still refuse to lose total hope. After all these years I have adjusted my life to what I must do to feel safe when wearing a wig, and all the other adjustments to things that go along with all the other allergies that I have that may or may not be connected with my autoimmune disease. Giving up and acceptance the same, in my book no not so much. I did go thru years of finding that next doctor who would know the right thing to do to "fix" this, of course that never happened. Came close by accident when we lived in the Netherlands, the doctor put me on high doses of thyroid medication, my hair started growing back, my eyelashes and brows did grow back, but I also did something I had not been able to do in over 15 years, I got pregnant, when that happened, they took me off the meds and no more regrowth and it was time for us to rotate back to the USA, no American doctor would put me on the same medication. So instead of hair, I have a daughter. So in short we should NOT lose hope.

Comment by Delilah on July 17, 2013 at 9:15pm

Kim, your story is almost a mirror image of mine, although I've only been suffering alopecia totalis for 2 yrs. I've had asthma, eczema & allergies all my life. Some years are tougher than others especially on the eczema front. Thankfully the allergies have subsided the older I got. My parents have spend thousands on medications, homeopathic treatments & the like. I have had success with some of these but its always temporary, I'm also 33 yrs old.

During my journey I did find out that I have a sensitivity to gluten products. As a result my eczema has been much more controllable, so perhaps something to consider to help yours? It was SO bad some days I couldn't leave the house, I'd have alopecia ANY day over chronic eczema like that. Unfortunately the more autoimmune diseases one has the more susceptible we are for more, so I read somewhere. But I feel the same way as you 'when is it ever going to stop'... and how much more can I take. Just want you to know your not alone.

Well said Debbi!!!

Comment by Sue Ellen on July 17, 2013 at 9:43pm

Kim, I have alopecia universalis and suffer from asthma, eczema and allergies all my life. I didn't get the universalis until one year ago. Maybe because I'm 62 years old, I'm not letting it make me crazy. I told everyone at work, I have 3 different wigs, I would LOVE to have hair on my head someday but I'm trying not to let it control my life. I've joined a couple women's groups and find comfort there. My husband and adult kids are understanding and accepting. Hugs to you.

Comment by Lindee on July 17, 2013 at 9:47pm

I have wondered the same thing over the past few months. I have AT bordering AU, all within a year, everything has changed, I have grieved, altered many things in my life and spent far to much money on charletons promising cures. Six months ago a landed a job after many years at home and with the support of beautiful friends and family, I have become far too busy to spend too much time thinking about my condition. I can't let it rule my life, my loved ones love me regardless and with this I feel blessed. I remain mostly gluten free, maintain a few supplements that support overall good health and even have started to dream of hair growth instead of having nightmares of hair falling out.......I have accepted my condition as a small part of who I am and choose to believe that everything is for a reason. Also miracles do happen! Hugs!

Comment by Sue M on July 17, 2013 at 10:42pm

I lost my hair when I was six years old, so technically, I don't know any better. I've been wearing wigs since I can remember. And yes, they are a pain, can be hot, but I'm okay with it and am actually pretty good at making them look very natural. I've given up a long time ago and have accepted that my hair will not grow back. I too have allergies and eczema and sometimes, I'd rather have nice skin than hair. I also grew up with a brother who is severely handicapped, so if I start feeling sorry for myself, I always had an immediate reminder that things in life could be a lot worse. From time to time, I'll have my pity party, but it doesn't last long. Life is too short. My mother once said that no one is thinking about it as much as you are. She was right. Best of luck to you.

Comment by kathleen zimmerman on July 17, 2013 at 11:05pm

Expect/Accept the worst, hope for the best. I think you are putting too much effort into something that may not change despite your best efforts. It's not a matter of, if I just try harder, or be a little more dilligent.

My son has the Alopecia and has had it since 6=7 months of age, he is 19 now and is somewhere between Totalis and Universalis.

He might spend money on a particular hat he likes, other than that, he would never spend money, nor time, searching for an answer, to regrowth...not yet anyway...to him regrowth is in the realm of the unknown.

Don't beat yourself up over this.

Eating healthy...now that is something to spend time on...GMO, Organic....a plethora of information to research.

Funny thing...I never see my son as not having hair...I just see him as Nick. I also agree with MYa'sMommy.

Comment by Rashedat on July 17, 2013 at 11:31pm

Hi
I live in south Africa too and at age 15 I lost all my hair. I am 31 now and I have accepted it . Like most people say I am not my hair well I am not my hair lost. It is not easy but I have learn to love the freedom not have hair has give me. It took me 12 year to get to the point where I openly bald. I now have a chooce everyday to go bald or to wear my wig. And most day I leave the wig at home.
Hang in there and I hope you find your peace.

Comment by Judy Woolley on July 18, 2013 at 2:54am

Hi Kim
I so totally understand where you are coming from. I lost all my hair in 2008 over the space of a 3-4 months. I have alopecia Universalis. I have suffered from ezcema since I was born and suffered from asthma since my 30s. Admittedly my ezcema has improved (with age) although I try not to eat too much dairy products or foods with colourings in (E102 and E110 are very very bad, blue and yellow). I have had a spate over the last four years where I have had tufts of hair grow back and then disappear as fast again. Which is quite demoralising. At the moment I have fine hair coming back and - this should give you a laugh - black hairs on my chin - gordon bennett trev wouldnt you know it, the one place I DON'T want hairs. I have those days too, especially when bombarded by hair shampoo adverts on TV arghhhhhh, that get to me and it is hard. But life throws these curve balls at us and we just have to look at the bigger picture and the people around us who love us for what we are and who we are not what we look like. Big hugs to you my love. Stand tall and smile and we all smile with you :)

Comment by MaddiiBoo on July 18, 2013 at 4:56am

I don't think acceptance is giving up. Acceptance is taking back control of your life. It's being yourself. Most of all it's about being peace. The hardest year of my life was when I was trying to reverse my alopecia and thought I was ugly because I was bald. Now I realize I was wrong. I am still who I am. Alopecia does not define me. When I accepted this, I did not give up, I just moved ahead with my life. Still wish I had hair every now and then but I don't obsess with it at all like I used to.

Comment by ILA on July 18, 2013 at 5:28am

accepting it will bring you inner peace. I have alopecia totalis and have had it since I was 6, I am now 39. Struggling with alopecia as a child made me who I am today. We are who we are for a reason. somethings are out of our control. I'm not saying don't try I'm just saying accept who you are.

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