Help?

I Just became a member of alopecia world and reading all of the positive comments and support for each other is really encouraging. I've had Alopecia Areata since the age of 16 and I am now 23 years old. I always knew about support groups but never took advantage of them for some reason. Maybe it was denial? Or just my flat out stubbornness? But anyway I used to receive cortisone shots for the first three years of having this disease but after a while I started noticing indents on my scalp from where I had been injected. Needless to say that was not the right path for me and I discontinued treatments. Although the treatments did work, I didn't want to know what the outcome/ side effects would be years down the line if I were to continue. Since then I have experimented with multiple remedies but can never seem to stick with it long enough to truley know what helps. Last year my aunt recommended her kineisologist to me and decided to give it a go. Seeing her has really improved my overall health and it was also brought to my knowledge that my body disagrees with wheat and I'm low in iron (in which case, I have noticed other gluten free intolerances through fellow alopician blogs). The problem though is my hair is the worst I've seen it yet and I'm truely concerned I'm going to lose all of my hair. I don't know what to do anymore and it can really be emotionally draining. I'm trying to stay positive and remind myself how blessed I am. My main question though, are there any encouraging/success stories out there? Any views or outlooks to keep my head and hopes high?

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Permalink Reply by traci on February 24, 2012 at 8:09am

Hi Nikki, welcome to AW!

I understand your up-and-down emotions about handling alopecia. It can be tough to cope with the hair loss and it can take over your every day life. Advice for this is always "easier said than done," but I can tell you from experience: things will get better! I started losing my hair when I was seven; I'm 23 now. The first moment I really started to feel like things could be okay was when I reached high school and was surrounded by a different group of people, and when I told them I had alopecia and wore a wig, they were accepting and wonderful. It can change your life to have support, so don't be afraid to tell people who are close to you and whom you trust! Joining AW helped me too--I love reading the encouraging comments of fellow alopecians and talking with other people who really understand what I'm going through.

It sounds cheesy, but look at the hair loss as a gift: it's taken me awhile to see it that way, and I don't always see it that way either, but I've learned to appreciate inner beauty so much more. And I've learned to focus on other things: inner happiness, creativity/art, etc. I found that once I stopped focusing on every possible cure I could find (and I've tried A LOT of random experimental thins!), I was much happier.

Best of luck to you and stay active on AW! It's a lifechanger :)

Permalink Reply by Nikki on February 24, 2012 at 10:22am
traci, thank you so much for the response and encouraging words. It really is such a random disease and impossible to pin point. But it's good to see everyone keeps the positivity flowing. Did you start out with alopecia areata at first? I'm just curious if is possible for me to lose all of my hair because ive never completely gone bald. Just bald spots all over my head...
Permalink Reply by traci on February 24, 2012 at 8:45pm

I started with alopecia areata, yeah. It was these small dime-sized spots around my head, but the hair would grow back. It didn't start falling out consistently (and quickly) until about two years after it had first started and I lost about 80% of my hair by the time I was 11. I think it varies for everyone though--I know some people who've lost hair in spots around their head, and then the hair grew back and it never fell out again.

Permalink Reply by Michele on February 24, 2012 at 5:10pm

Hi Nikki~ I also just became a member of Alopecia World. I was diagnosed last month (Jan.2012). I am curious to hear if anyone has a success story where their hair has grown back. I've yet to hear of any. The success stories seem to be the people that have true acceptance. I am not there yet of course, but this site has been inspirational. I also am losing patches of hair throughout my head and have to wear a hat to cover the bald patches on and around my part. I have spoken to 3 people that are friends of friends with Alopecia and all tell me to make the appt. to get a wig...to stop the cortizone shots and to prepare to go bald. I am not ready for that either. I'm taking one day at a time because looking ahead is too overwhelming. It is hard not knowing what my hair will be like a month from now...a year form now. I appreciate hearing people say that this isn't my fault...that I didn't cause the baldness on my head. I think you have a good attitude about staying positive and looking at the blessings in our lives. :)

Permalink Reply by Nikki on February 24, 2012 at 7:59pm
Michele-it's true that you must find acceptance but at the same time you must keep that flame of hope burning because it's true when they say "mind over matter". It is a powerful thing and stick with whatever positivity that you can because the second you start sinking into negativity your allowing your emotions to take over. I truely believe "you are what you eat" and that we must be out own bodies scientist and figure out through trial and error what or body is lacking. Each one of us are very different yet very alike. Just remember to keep that flame burning. :)
Permalink Reply by Michele on February 25, 2012 at 12:49pm

Thank you Nikki!

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