Meet Our Members

Unique Journeys with Scarring Alopecia at SAF

When living with a rare disease, it is comforting to know that you are not alone. Each person’s journey with scarring alopecia is unique to them. Learn, be inspired, and get to know others through the connections at SAF.

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Courtney H
My hair journey started with self-love, progressed to a creative career, then to advocacy, which led me to SAF.
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Chris J
I think it’s okay to feel sad and mad, angry and sometimes depressed. I think we need to validate those feelings for ourselves, because the world doesn’t yet appreciate the full impact of skin diseases.
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Sista D
Over the past eight months, I’ve reached a level of comfort with my disease that I couldn’t imagine was possible.
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Sally W
United, we are joining the battle to win the war on scarring alopecia. Our stories give strength to each other as we journey down this road together.
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Teresa A
Equip yourself on what you will do if you lose more hair —have a plan. Then just enjoy life.
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Angela P
You can and will get over it and you’ll figure out how to make it work in your life. Good luck! You are not alone in this journey.
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Betty T
If anyone is going to find an answer, it’s going to involve patients working together.
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Kris W
Permanent hair loss is devastating and a grieving process is necessary for anyone who finds themselves recently diagnosed. However, know you are not alone.
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Jen R
In the mid 90s I developed oral lichen planus, initially I thought I had eaten something with MSG, but five doctors and a biopsy later – I was diagnosed.
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Aloma L
My path from discovery to diagnosis of scarring alopecia was long and circuitous.
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Adrienne B
Yes, I still freak out and have bouts of depression and sleepless nights, but I know in my heart of hearts, I am doing everything humanly possible to find answers.
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Sandra P
Beauty doesn’t follow a mold, beauty is your own glow.
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Tina C
Just knowing that other people are out there who have scarring alopecia and live normal lives has helped me.
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Mary B
Overall, I decided to control what I can control. Be as healthy as I can be. Find peace and be nice to myself. Protect my heart. Find joy in simple things.