Patrish
  • Female
  • Iva, SC
  • United States
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Bon left a comment for Patrish
"Hi Patrish, pretty woman!  I have a rare form called Lichen Planopairlis, scarring. I guess living with thick curly hair most of my life I feel the Universe blessed me for many years so moving into acceptance has been easier for me. I am not…"
May 1, 2020

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Married
About Me:
I have slowly watched my hair thin for the past three years and am now at the point of devastation. I have what appears to be frontal fibrosis alopecia. I suffer from fibromyalgia and not sure if this may be response to the autoimmune or genetics, as my maternal grandmother suffered hair loss. This has been one of the hardest things I've ever had to endure in my life. I've always been a very "girly girl" and have loved doing all those things most women love doing to make themselves feel attractive. It's very hard for me to even want to get dressed these days! I am a mother of two... A daughter who just married, and a son who just graduated from college. The hair loss hit during the empty nest time and, of course, that isn't easy either. I am 57 years old and this condition makes me feel much older than I am. I am now exploring and researching wigs. That has been very difficult as they are sooo expensive, especially human hair. Human hair is my choice as it looks more natural. I find myself not doing the things I use to do ... not as sociable and active. This loss has pretty much changed my life. I want to try and find ways to move forward, accept myself, and make the best of this loss. I am interested in finding on this site new options as far as wigs, etc and also how others find comfort and acceptance. I hope to meet people who understand and can share their journey.
Do you have alopecia?
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

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At 11:04pm on May 1, 2020, Bon said…

Hi Patrish, pretty woman!  I have a rare form called Lichen Planopairlis, scarring. I guess living with thick curly hair most of my life I feel the Universe blessed me for many years so moving into acceptance has been easier for me. I am not saying it hasn't been difficult at times but in the big picture I am blessed in so many other ways. I refused the usual meds prescribed for this as the side effects would damage an otherwise perfectly healthy body! Instead through research and a brilliant ND I am on natural very interesting therapies. I am not in fear but have become very curious about autoimmune conditions. Do you know what percentage of the population have candida and don't know it? High. There is definitely a link between yeast overgrowth and alopecia. Also, my ND discovered that yeast Love Biotin!!! She has me on two interesting treatments with no side effects!  If you are interested in them or any information I have to share, feel free to friend me here or on FB. Look up Bonnie Weiss-McDonald on FB. Stay well during these trying times and remember to make a short gratitude list at night....you'd be surprised how powerful our thoughts are....what we give our energy and focus to eventually will be brought into our lives so keep it positive.  Bon

At 5:55pm on February 3, 2018, Plf said…
  • Hi patrish, thanks for taking the time to add to the discussion, I too am 57 and as my hair dresser says far too young to lose my hair.  My dermatologist did not take a biopsy but really my hair loss and the resultant look pretty much classic FFA presentation.  I have lots of lovely support but my younger sister really think "it's life, buy a wig and it could be worse", ..ha I'm glad she doesn't work in a health professional role" .will do more homework on drugs , but what concerns me is that they r for life.  As you say the condition often halts itself but I cannot find many facts and figures regarding this, if the disease burns itself our out after you have lost 5 -8 cm from the front of your hairline..you would be wearing a wig anyway.  Being a predominantly female conditions means it won't get the research into it that it would if it was a male disorder.. I'm sorry to hear you also suffer fibromyalgia, I have a colleague that suffers from that also it sounds horrible.  Congratulations on your son's graduation and your daughter's wedding, two lovely milestones in family life, I hope FFA didn't spoil these occasions for you, at this moment I'm trying to focus on the good stuff...despite being very angry and sad about this awful condition. Will keep you updated re how medication s go, enjoy your sunday
 
 
 

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