Alopecia World
www.alopeciaworld.com
New from Minnesota
Hi everyone -
I am new to Alopecia world. I was diagnosed with Diffuse Alopecia, Alopecia Areata and Telegum Effluvium 2.5 years ago. Im now 46 years old. As most of you were, you can imagine my shock when after 40 years of battling with obnoxious, thick curly hair, it started to fall out.
I have been up to 90% bald, gone through some small regrowth patches, to currently in a state of heavy shedding again - both old and new patches. I was also blindsided with a host of other health conditions (autoimmune and otherwise) at exactly the same time my Alopecia started. Have always wondered what was the trigger and if there is some connection.
Wondering if there is a support group on here from MN. Id love to meet up w/ other 'alopecians' to share stories, support, ideas....etc.
It has been a journey like no other. But Im on the 'other side' now where Ive learned to live with it (wigs and caps), and want to support others and help educate those around us.
Would welcome hearing from any of you -- especially those in the midwest.
Thanks!
Carol
Replies to This Discussion
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Permalink Reply by Starshine on
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Hi carol. I am about your age and was diagnosed with diffuse AA a year ago. It certainly has been a journey, one I would like to have avoided. I also wonder what the trigger was. I have about 50 percent loss and am currentky trying oral steroids, rogaine and a diet change. What treatments gave you tried. So far, I have not seen much change, but I have not given up hope.
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Hi Starshine -
Thanks for responding. Are you from MN?
I tried several of the standard treatments....topicals, shampoos, diet, oral steroids. i never did the injections. As i stated, I got bombarded with other autoimmune stuff at the same time --Psoriasis being a bad one. It was all over my body at one point so I was forced to try, Cyclosporine And Humira. Those calmed down my psoriasis but also caused my hair to start growing pretty fast. I was excited. BUT -- as soon as I stopped taking them, all the regrown hair fell back out. And then I continued on to near bald. It IS a journey as you said. Not a fun one! I try to take each day one at a time. Mostly good days - but when the bad ones come, I let them. And they stink. :)
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Hi Carol. No I live in Maryland. I am afraid that if I do get regrowth from the Prednisone and Methotrexate, it will fall out again, but really what do I have to lose. Its most likely going south anyway. Do you have any idea what triggered yours? Did you also lose eyebrows or body hair? I think the only way to cope is to take one day at a time and try to live as normally as possible, hard as that is. I do get depressed as I also had thick, obnoxious curly hair, but try not to dwell on it. I wear a topper now but am afraid I will need a wig soon. It is hard to accept that this is happening, but there does not seem to be much else we can do. Feel free to send a friend request if you just need to talk.
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I agree! One day at a time. I must admit, as hard as it was to get my first wig, it sure gave me my life back. Took some getting used to -- especially coming 'out' to friends and families the first few months -- but after that, I learned to love the wigs. I even sometimes get comments from friends who are jealous because my 'hair always looks good'. :) Funny!
My hair loss has mostly been on my scalp. My eyebrows have thinned, but never shown any true 'spots'. There was a period last year where ALL my hair just stopped growing (legs, pubic, arms...etc) but didn't actually fall out. I just remembered not needed to shave my legs very often. That has since stopped.
As for the methotrexate...etc...it is so similar to the Cyclosporine i was on, and yes, it will cause hair to grow, but you are right, it will all fall out once you stop taking the drug. I will send a 'friend request'. As great as my support system is (friends and families) it sure is nice to talk to someone who really understands what we go through.
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I got the friend request and will send you message to your inbox later. It is good to hear that your body hair has started to regrow. Mine has gotten real slow and I was concerned I was going AU although I still have some. It is really nice to talk with someone who has such a similar condition. Family is great but no one really understands unless they are going through it. I would love to hear about your wigs. Will write more later when I have more time.
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Anyone else out there from Minnesota? Still wondering about support groups in this area. Hope all of you are doing well.....
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Permalink Reply by Alliegator on
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Hi and welcome!
Since you have AA, you might try to contact NAAF to see if they are aware of any support groups in your area. They might have a representative for the area who will know about the support group.
I aslo have been on a journey like no other. I wear wigs, go bald and wear hats/scarves. Glad you joined the site!
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Thanks Alliegator --
I've been on the NAAF boards as well - thanks for the recommendation.
Happy Thanksgiving !!
Carol
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You're Welcome! Happy Thanksgiving
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Happy Thanksgiving everyone! Hope you all had a wonderful holiday and were able to put away our alopecia for the day and be thankful for all the other things in our lives. I know I did. Just wanted to let you know that I decided to start a blog.....mostly for therapy for me.....but wanted to give you the link if you ever feel like taking a peek. Its only my first entry -- a long ways to go-- but I really believe that if we keep talking...people will listen and we'll get closer and closer to finding a successful treatment or cure for this life altering disease.
Here is the link;
http://goldilockshasalopecia.blogspot.comIm thankful for everyone on Alopecia World and your support!
Happy Thanksgiving
Carol
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Permalink Reply by chris for hair on
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Hi Carol, Having had Lupus for 30+years and published a book which enabled me to be in contact with thousands of chronically ill people, I have learned that even prolonged stress can be a trigger if one is predisposed. Anything that evokes an immune response (allergy) over a long period of time can cause a autoimmune condition. I believe the key to living the best life possible with any chronic condition is balance. For me, lots of exercise, clean eating are the keys to allowing me to function. When I get out of balance, ie. work too much, my body tells me. Last year it was by losing all the hair on the top of my head. Thankfully it has grown back.
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