Dear friends and loved ones:
As some of you know, I’ve been struggling with a medical condition called Alopecia Aereata for the past year and a half.
For those who are unfamiliar with what that is, basically, the hair on my head has been steadily falling out for quite some time and it will continue to do so until I am fully bald. It has negatively impacted my mental wellbeing in a way that I never imagined possible… which is why I’m reaching out for your help.
I first noticed the hair loss on my first long motorcycle trip to Webster, NY with my husband and all his brothers. There was a small bald patch on the top of my head. Since then, it has progressively grown to over half of my head.
For those who are familiar with my family’s situation, you know that my husband Nic suffers from chronic pain day after day. It was an intense episode during which he experienced horrible side effects to medications that interfered with one another that my specialist believes may have triggered my Alopecia. After several long days of watching Nic have hallucinations and delirium, with multiple trips to the hospital, I felt stressed and exhausted, thus weakening my immune system and allowing for this autoimmune disorder to take its hold on me.
Our family continues to struggle with Nic’s chronic pain, as it’s something that is sometimes managed but will never go away. I sit beside him at the hospital during his attacks and I can’t imagine what it is he goes through. All I can focus on ishow much I wish and pray his pain will go away… how I admire him for the fact that most days he goes about his day as though he were healthy as anyone else. I see this and should be grateful… I should be so relieved that it’s only my appearance that’s affected.
It feels silly… I don’t have Cancer, I’m not dying and am not in any physical pain. But I can’t seem to get past the fact that every time I look in the mirror, all I see is an unattractive balding woman. Mentally, this drives me CRAZY! You may see me differently, but all I can think of is ‘I wonder if any of my bald patches are showing’ or ‘I hope the wind doesn’t get any stronger, everyone will see what I’m trying to hide’. I catch myself unfamiliar with who I am. I’m currently at a point where I don’t feel comfortable in my own skin these days, especially in the social situations that I once loved so much.
I was referred to a terrific specialist in Toronto last July and was feeling optimistic. Over the next year, there were several other complications with my husband’s health and my hair continued to fall out. I was told this March that the steroids I was getting were no longer working as my hair loss was becoming too much to keep up with. This specialist referred me to a dermatology clinic that participates in clinical studies. In April of this year I started my application. After 3 visits, approximately 12 hours of probing and questionnaires, I’ve been denied as a participant in the study. I was denied because although I meet the requirements of the 52% hair loss, they are only accepting 150 participants and they’ve chosen those with closer to 80% hair loss.
Now that I’ve been denied the clinical study, I’ve made a choice. That choice is to donate the hair that I have left and move on to my new identity, ME with a wig. It’s terrifying I’ll admit, but I know that it’s what needs to happen. This is where I’m asking for your help…
As we are a self-employed family with no health benefits and the cost of each of the real human hair wigs has been quoted to me at $3000 each, anything at all that you could contribute financially to support my purchase of these wigs would be so greatly appreciated.
I dream of the day that I can feel like myself again. I can’t wait to have my confidence back, loving those social moments with my friends and family, not stuck struggling with insecurity, anxiety and self-identity.
Thank you for listening to my story
- Deb Litte & Steve Law
- Garry Perkins
- sandra l kaddie
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