Alopecia Hair Loss vs. Cancer Hair loss

I don't want to sound like I'm a terrible person because I'm not. But lately it seems I find more and more programs that provide free wigs to people who have cancer and not to people who have alopecia (especially adults with alopecia). The only program I know of is Locks of Love, but the age limit is 21. I feel bad for those who have cancer and have to go through chemo treatment and everything, but I am living my entire life without hair, no way to grow my hair back at all, when cancer patients have a better chance of growing their hair. Again, I'm not trying to be rude towards people with cancer....but what I don't understand is how alopecia hair loss is any different from cancer hair loss. Hair loss is hair loss. I don't understand why there are so many programs and organizations that help cancer patients get free wigs. Honestly it makes me feel like I have to be sick and dying just to get a wig (again, no offense to anyone). I just don't get it is all.......
When I called the insurance company a while ago I had asked if they'd cover a cranial prosthetsis for a medical condition, and they asked what it is, I said alopecia universalis. All she said back to me was, Alopecia? Okay, not cancer. I felt like I was insulted because I have alopecia. Because I'm bald just because I lost my hair. I just don't understand it is all and I can't wrap my mind around any of this either.

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Permalink Reply by Alo-mom on March 1, 2017 at 1:57pm

Hello Sierra, I am still working on finding you a wig that meets your needs. You sent me pictures of a few weeks ago. I will keep working on this. ALOMOM

Permalink Reply by Return_life on March 1, 2017 at 11:56pm
Hi Sierra actually u nailed it in your post.
Alopecia community including health care practionners, patients, insurance... is one of the worst. emotionally it is devastating but it looks like nobody cares. I understand your point 100%. you know when someone is a cancer survivor you see it everywhere like it is something to be proud. but alopecia is the opposite. most of us hide. when one alopecian gets his hair back he disappear from the community. this site is THE only good site. and even in this one most of the people once they get their hair back you don't see them anymore!
Permalink Reply by Camryn on March 2, 2017 at 2:38pm

You're completely right. Hair loss is hair loss. There should be no differentiation. Whether someone has cancer or alopecia, they have lost their hair through no fault of their own and may need financial assistance for a wig. In part I think cancer patients get more assistance because the lifetime risk of developing cancer is so much greater than alopecia. Cancer is a very high profile disease but that doesn't mean folks like the insurance company you dealt with couldn't try to show some sensitivity to those of us losing hair due to other conditions.

Permalink Reply by Camryn on March 2, 2017 at 6:51pm

Just to add, I stumbled across the British Association of Dermatologists  website only a few minutes ago and one page mentions if you have alopecia you can get a wig on the National Health system on a doctor's prescription. So some places are better at helping than others.

Permalink Reply by SabineTawni on March 3, 2017 at 10:15am
Your post is right on! Of course, I feel sympathetic towards people with cancer. But their hair loss issue is totally different. The hair grows back after cancer treatment. Our hair loss is much more unpredictable and could even be permanent. The reason people are more focused on the hair loss issue with cancer patients is because the cancer patients have a much more vocal and larger lobby. They kick and scream until they get want they want. Good for them! However, our hair loss issues are the result of an auto immune disease; therefore, wigs SHOULD be covered. How can insurance companies provide wigs for one disease and not another? The answer is: THEY KNOW THEY CAN GET AWAY WITH IT!!
Permalink Reply by Zainab on March 8, 2017 at 9:46am

I know right. To be honest alopecia is incredibly underrated. I understand that there are worst problems in the world and all, but alopecia is a problem too. I don't have hair or eyebrows or eyelashes. Something that many people have. It's hard sometimes. So I completely agree with you. I defiantly think that alopecia should be something that's more known because it's hard too. 

Permalink Reply by Richard Bale on May 6, 2019 at 3:07am

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Permalink Reply by Carl Merz on July 3, 2019 at 2:53pm

Sierra,  I agree with you 100%.  I have had AU for 44 years now and its treated no differently now in the insurance/medical community as it was back then.

Permalink Reply by sampeckard on June 24, 2022 at 3:55am

Am I correct in assuming that you didn't worry about fertility before you wanted to have a baby? Strangely, your wife doesn't want you to understand that you've had major surgery and disease, the effects of which are permanent. Cancer cells usually don't die completely, and there can be recurrences if you study rm models. Look at the studies, and it says fertility is a sensitive subject. There are proven studies that men can have children, but it's a big risk after chemotherapy. The body has to recover.

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