Replies to This Discussion

Permalink Reply by BaldGirlsDoLunch.org on February 6, 2010 at 8:35pm

Hi Debbie,

Oh...so sorry it was last week and not next week.:-( We had an impromptu BGDL "evening edition" last weekend and included friends, moms and daughters when I had a last minute weekend in Los Angeles.

Please join my main contact list to get notices for next time.

July 1-31, 2010 is the first full July since that month has been officially designated "Women with Alopecia" month. Here's the link and contact info about Women with Alopecia month.

If you and your daughter would like to be one of my local contacts for an awareness event in the area, please let me know. I have other contacts in the region ( Riverside and Anaheim come to mind) nearby and will see if any are teens.

Thea
www.baldgirlsdolunch.org

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Permalink Reply by Connie - Chris' Mom on March 16, 2010 at 10:18am

Hi Debbie,

We live in Montclair and we just found out last week that my son's total hair loss was Alopecia Universalis, not nutrition related. He's 15 and a freshman and seems to be taking it well, but it's hard to tell with teenagers. He says he's dealt with it, but for 9 months we were going on the assumption that once his anemia was resolved the hair would grow back to the way it was before. Now after several months of good lab results and no hair the doctors have concluded that it was an autoimmune disorder, not the anemia, and his hair loss might be permanent. He had also lost his fingernails and toenails, but fortunately those have started to grow back.

I asked him if he'd like to contact other teens with alopecia and he wouldn't really answer, but I too thought it might help to connect with others.

Connie

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Permalink Reply by Debbie Haynes on March 29, 2010 at 7:04pm

Hi Connie,

You know how teens are... You live very close. I am sorry your dr. did not know what was wrong with your son. I was fortunate to have a wonderful hairdresser that told me what was wrong and not allow the dr. to say anything else - well he didn't.

Anyway how are you doing? Elizabeth hasn't came to grips yet, she is loosing her eyelashes and eyebrows now. I know as a parent you tend to feel helpless!

Elizabeth will be starting high school in the fall and would love to have contact with other kids. Your son will have the option.

Debbie

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Permalink Reply by Connie - Chris' Mom on March 29, 2010 at 11:08pm

Hi Debbie,

It's nice to correspond with another Mom who knows what this is like. I just wish I could take it all away.

I know it sounds like I was blaming the doctors for a misdiagnosis, but actually I think they were trying to help with the bigger picture. The lab work showed a severe case of anemia which we soon discovered was caused by bleeding ulcers in his colon. He has since been diagnosed with Ulcerative Colitis, another autoimmune disease with no cure. If it hadn't been for the hair loss we wouldn't have even gone to the doctor. We still don't know why he wasn't in severe pain, but I guess I can add that to our list of mysteries. I have a feeling that the Dermatologist suspected the Alopecia but wanted to make sure that we took care of the gastro issues first, as they were serious. He knew that the hair loss was all my son was concerned with and didn't want to add to his stress level by telling him what may be causing his hair loss, especially when there wasn't anything we could do about it. We now have his dermatologist and his gastro-enterologist working together so that hopefully the medications for the UC don't exasperate the AU.

As for your daughter starting high school, that was my biggest fear for my son. He lost his hair at the end of 8th grade. I was sure that the high school students would be cruel in their teasing of a boy with no hair. His junior high counselor (who had been great) contacted the high school counselor before school was even out. The high school counselor then contacted us during the summer and had us meet with him before school started. My son was able to get to meet him and see that he had someone on his side, an ally, when he started high school. All of his teachers were also notified before school started. We seemingly worried about nothing as most everyone has been extremely nice to him (of course most probably think he has cancer).

The main issue now is his own attitude. Since he found out that his hair loss may be permanent his grades have plummeted and his teachers tell me that he just "zones out" in class. I've tried talking to him but he claims to have "dealt with it", and is "fine". It just breaks my heart to not know what to say or do at this point. I know he's hurting and I feel so helpless. This past summer we had to deal with the implications of the Ulcerative Colitis and the life-long treatments and testing associated with it. Now this... it almost seems more than I can handle, how can I expect a 15 year old to handle it? If it wasn't for our strong faith and assurance that our loving God has promised to not give us more than we can handle and that He will make us stronger for having gone through this, I don't know what we would do. We just take one day at a time and still pray for a miracle (even if it's just the miracle of knowing how to accept all of this).

Connie

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