UPDATE 9/7 - I can really use some support

I wasn't going to post about this, but I am having such a hard time that I really could use all the support I can get.

As posted previously I have a type of alopecia that may potentially take all my hair and never regrow. It's a scarring condition and has gotten a lot worse over the last 3 months.

I am work with doctors at NYU dermatology to try to get this under control but it looks like right now the alopecia is winning. I am seeing one of the top doctors who specializes in this at the end of July. He lives in Vancouver and is only at NYU once a month.

Please pray for me. My anxiety, stress and devastation is making my condition worse. I can't stop crying, I am scared of what is possibly to come and what life will be like if I lose it all and have to where wigs for the rest of my life. I know I am not dying...but I just can't get a grip on this.

Please send prayers that the meds start to work and halt the hair loss...i panic every time I shower...I can't look in the mirror or even touch my hair...it stays back wet in a bun all day..everyday.


______________________________

So many people have reached out to me since I have been dealing with this devastating hair loss. I have just started feeling more comfortable sharing the latest news so I wanted to update you guys who have been so wonderful.

I am THRILLED to say that my hair is growing back. It's simily unbelievable and unexplainable. My doctor is completely stumped and currently going through the legal process so he can publicly document this situation. I was supposed to have scarring alopecia where no hair would ever grow back where hair was lost due to the follicle being killed off. I had biopies and cultures and special microscopes in my head over the past year and a half and what is going on now is simply a mystery. I was on major medication for the most part of 2009, I stopped all medical intervention in January 2010 because I was losing the battle fast and decided to just move on with my life and try to start a family with my DH.

I am currently 27 weeks pregnant. Now pregnancy can cause hair growth, but not in my case. Not in areas where there is no hair follicle left...which was the case in the hair loss I experienced. I have clumps of hair growing all over my head...not just whispers of hair...clumps!! It is about 3-4 inches long in most areas and the areas that had the most recent loss is about 1-2 inches long.

I am cautiously optimistic that this will continue, however I am realistic that I will likely suffer from some kind of hair loss again. With that said, what I have is indeed NOT scarring, which means I may have ups and downs...but that is much easier to handle than the prospect of permanent hair loss with no chance of regeneration.

Things are looking up and I am so grateful that I can put this nightmare behind me for a while and just enjoy this new amazing phase of my life with my family. I never believed in miracles or answered prayers...just was never me...but for some reason I feel my wish was granted.

Thanks again for all the support!

Message edited 9/7/2010 3:33:03 PM.

Re: I can really use some support

I'm so sorry you are dealing with this illness.

Allow yourself to be sad about the hairloss but try to remain positive about seeing this other doc. There may be a way you can keep the hair you have and restore what was lost.

I understand it's a grieving process especially for women.

Try not to grieve just yet. Maybe some therapy or some medication can help you shake this a bit? Just enough to carry on and concentrate on what's good in your life.

Re: I can really use some support

I'm so sorry you are going through this. I don't have any advice, just

Re: I can really use some support

I just have and

Re: I can really use some support

Posted by Blu-ize

I'm so sorry you are dealing with this illness.

Allow yourself to be sad about the hairloss but try to remain positive about seeing this other doc. There may be a way you can keep the hair you have and restore what was lost.

I understand it's a grieving process especially for women.

Try not to grieve just yet. Maybe some therapy or some medication can help you shake this a bit? Just enough to carry on and concentrate on what's good in your life.

Re: I can really use some support

Posted by robynfs

Posted by Blu-ize

I'm so sorry you are dealing with this illness.

Allow yourself to be sad about the hairloss but try to remain positive about seeing this other doc. There may be a way you can keep the hair you have and restore what was lost.

I understand it's a grieving process especially for women.

Try not to grieve just yet. Maybe some therapy or some medication can help you shake this a bit? Just enough to carry on and concentrate on what's good in your life.

Thank you. Everything you said is so right...I am concentrating on the worst case and grieving this loss. I think it's because I want to make sure I can handle it, but its really just making me crazy now.

I am starting therapy again this week and have a consultation with an accupuncturist later today. I have never done it before but don't think it can hurt.

Thanks for all the support...I do need to keep reminding myself these things!

Re: I can really use some support

Re: I can really use some support

and

I emailed you last week, I hope you got it. You will make it through this.

Re: I can really use some support

Re: I can really use some support

Re: I can really use some support

I have no idea if you've tried this, or if it would work for your type of hairloss, but a co-worker of mine was diagnosed with alopecia about 4 months ago. her hair was falling out FAST with no regrowth. After receiving cortizone (i think) shots in her scalp, nothing was helping regrowth.

She is of Indian decent, and her aunt is an herbalist and accupuncturist (in Chicago). Turns out her aunt had patients who've had success with vitamin and accupunture therapy. My co-worker decided to try this.

I don't know to much about it, but my coworker was taking about 25 pills a day and having accupuncture all over her head (in the hairless spots). She hasn't had anymore hair loss, and the spots where she had lost hair, regrowth has started.

I don't know if you've ever given this a shot, but it's worth considering...

Good luck!!

Message edited 6/23/2009 6:05:11 PM.

Re: I can really use some support

Many hugs and prayers for you

Re: I can really use some support

Re: I can really use some support

Re: I can really use some support

Re: I can really use some support

Many prayers for you! I hope this doctor can help!

Re: I can really use some support

Re: I can really use some support

Thanks for all the support!

I have started accupuncture, not much proven that it works but can't hurt. Seeing a therapist to help me with the emotional side of all this. I am also starting a new drug (scared of this but will do anything at this point) and seeing the specialist in about a month.

The days are getting a little easier, and my mind is not wondering to that really dark place as much, however I am still really scared and pray that this time things will work out for me. That the hair will stop falling out, I can go on with my wedding as planned for October and get this disease into remission.

Thanks again for letting me vent.

Re: I can really use some support

I pray for the best. You have a great outlook and I am glad you are proactive in trying new things.

Re: I can really use some support

My boyfriend has alopecia. He gets cortizone shots in his scalp in the hair loss areas, and then has to take 6 prednisone pills 2 weeks following the shots at one time. He also takes biotin pills every morning, along with tums (for the calcium), and a mens one a day. Two times a day he uses rogaine and some other mouse type meds the doc gave him (also used for psoriasis). This routine has worked wonders for him, and his hair looks great!

You say you're working with great doctors, so i'm sure that they have you on some type of daily routine and I hope it works. Definitley talk to someone b/c this type of condition can make you depressed and lower your self esteem.

Stay strong!

Re: UPDATE 9/7 - I can really use some support

Update in first post!

Re: UPDATE 9/7 - I can really use some support

That is great news! I am so happy that the medicine is working for you! What a great update!

Re: UPDATE 9/7 - I can really use some support

Wonderful update!!!! So happy for you!!

Re: UPDATE 9/7 - I can really use some support

So happy to hear your great update.

Re: UPDATE 9/7 - I can really use some support

great update!!!!!

I am soo happy for you...I am not sure if you remember but I have alopecia as well. sooo excited for you!