I have been living with alopecia since 1991. Throughout the years, I have had alopecia areata and alopecia totalis. My life is not over, so there is still time for alopecia universalis. ;-) I have had many ups and down and find that I always come out on the other side standing tall.
It has always been a given for me to reach out to others with alopecia. I just did it naturally. I became involved in our local support group in Montreal, participated in the annual conferences of the National Alopecia Areata Foundation (NAAF), and also served as president of the Quebec Alopecia Areata Foundation (QAAF).
Someone once asked me what I planned to do after I moved to the USA. My initial thought was to attend or start a support group in Michigan, but I eventually settled on the wonderful idea of creating Alopecia World with my husband, rj jones, who was my fiancé at the time (2008).
On a personal note, I like to blend femininity and strength. A woman can be strong and physically capable as well as soft and feminine. For a long time, I thought I "had" to be one or the other, and I had a hard time finding my place. Blending both is very gratifying, indeed.
I also like to keep active. It does not have to be extreme. It can be a bike ride, walking, painting a room in the house, or cleaning the garage.
In April 2008, I married rj, a very special man that supports me in my alopecia and is the catalyst and the great mind behind the research and design of this site.
Please feel free to "friend" rj and me: We would love to make your acquaintance.
I've been seeing a a dermatologist who is a specialist on alopecia at University of Colorado Health. He has had me on Methotrexate for 2.5 years and I have 75% of my scalp hair, eyebrows and eyelashes back. This drug has made a huge difference for me. Though there are side affects, I have felt that they are worth the risk.
I live in the area of Detroit Michigan and wanted to share a small story. I was diagnosed in 2010 with alopecia universalis. Took about two years to fully lose about 75% of my body hair. I took a job working Outdoors and got lots and lots of sunlight on my bald head. I also started eating a little better. I feel vitamin D played a big part in my hair coming back even though the doctor said it wouldn't. It's been 4 years now and I've had a full head of hair and I wanted to share my story because I truly believe it has to do with a vitamin D deficiency even though my doctor tested me recently and told me I had zero vitamin D in my body so he prescribed me pills. I do now try to get out in the sun more often since I work in an office after I got my hair back. Feel free to email me if you had any questions or concerns just wanted to make sure one person heard my story considering I feel very lucky and concern for others that may have this condition. Eric email firstname.lastname@example.org
I would like to let the members know of something I have found useful in only the last several months. I have alopecia ophiasis (and have had occasionally nails come off) and was told from the beginning that it was unlikely to show improvement. For some 8 or so years, I went to various dermatologists in NYC hospitals. I had monthly steriod injections. Also for a short time, squaric acid to use at home. Finally after having been with one dematologist (having injections) she suggested Rogaine 5% and Fluocinonide 0.05%. I don't know whether to be pleased or angry that this was not mentioned years ago. Why? I have some hair regrowth in places that were completely bare. Also around the hairline I see some regrowth (mixture of dark and white, neither of which I am, but never mind). I can use the stronger Rogaine having had a hysterectomy some years ago. Being very fair I was not a candidate for laser treatment. Who knows if I had been given this much earlier whether the hair loss would have been far less. She has moved away so I cannot ask her but wanted to give this information to others in case it may be helpful to them. I use one in the morning and the other at night. It does make the hair look a bit dull - but that is a minimal problem. It is also cheaper than monthly injections. It would be wonderful if this could help others.
Doing fine. Retired, but still doing some teaching to cover dental, car, and fun. About to throw a big Polish Gourmet Dinner for AAUW...so I will be cooking and making name tags all weekend. Our area support group us doing great: Mike Chapman from SF spoke at the last meeting. Still single and sassy. How about you?
So glad to have found this site. After thyroid tests, vitamin level tests, 2 dermatologists, endocrinologist and ordering my own hormone level tests, no one defined what was going on with my hair for the past 4 years. First thinning, then noticeable change in texture, right side of head and around right ear and nape 50% less hair than left side. I have to do my own diagnosis given the lack of a knowledgeable Dr.i have given up and started never going out without a wig. I have quite a few now.but frustrated about where to turn next
Thank you so much for welcoming me to this community. I was just diagnosed with Alopecia Areata and Im getting to know so many things I didnt before. I pray this joirnet teaches me a lot of positive things and I cant get to help as lany people as I can
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