I am nearly 45. I am a mother and a wife. I noticed my hair falling out when I was 40. At that time, I was also newly diagnosed with celiac. My ferritin levels were 4, hemoglobin also low, vitamin d low and overall health not fabulous due to a lifetime of undiagnosed celiac. I healed fast from celiac issues once I removed gluten …. BUT … my ferritin levels stayed low and my hair kept thinning. I mentioned my hair thinning to my doctor several times. She never once looked at my scalp… in a politically correct way she said it was ‘all in my head.’
Approximately 3 years later I tried another doctor who did look at my scalp (including the small dime size patch of balding on my scalp). Her diagnosis was thyroid issues (even though thyroid bloodwork was in normal range). She said she would put me on Synthroid to make my hair stop falling out. Well, based on my family history of thyroid issues, that treatment made me run and NOT take the medication.
I had pretty much given up but decided to give one more doctor a chance. If they thought the bald patch on my scalp was normal and the extra hair that would be between my fingers after a shower was normal, I would leave it alone. To my luck, my last doctor was amazing! He was a new medical school graduate and took one look at my scalp and said it was alopecia. He thought androgenic alopecia (AA), but sent me to a dermatologist to confirm. On top of that, this young doctor administered iron through an IV (as I can’t absorb due to long term celiac), which made me feel so much better!
Last fall 2017, a dermatologist did a biopsy and confirmed that I have Pseudopelade Scarring Alopecia. To tell you the truth, when he first told me, I left his office and sat on the curb outside and cried. I’m a pretty calm, level headed, dignified gal …. but I sobbed on that curb.
I have gone for steroid injections for the past year. A year ago, I was receiving about 30-40 injections and now I get around 100 or more (yes … I count! As it gives my mind something to do!)?. I also put topical steroids on daily.
I think the worst part, for me, was asking my husband to go through my head and take photos so that I could compare months or a year later. BUT that was my issue …. he was so straightforward, calm and loving about it.
I have lost a fair bit of hair over this year. I now have many patches ranging from an eraser to a silver dollar size. I also have a fair bit of thinning in areas. My eyebrows have patches, too, so I add a bit of brow pencil to fill in the spots. I have also changed my haircut to cover up the patches and thinning areas. With all that said, I don’t think anyone would know unless they lifted my hair around!
In this past year, I have done a lot of research on the disease, medications and toppers/wigs. I have learned about a subject that I knew absolutely nothing about, and for that, I am thankful. I had no idea about alopecia let alone scarring alopecia. I’ve been inspired by ladies online who have shared their stories.
I don’t want to lose my hair, yet I have no control over this disease! So, I choose to not think about it every day… but to live! Yes, I do the treatments and drink green tea and put shea on my head once a week, but if I could encourage anyone reading this to do one thing —it would be to stop googling or allow yourself a google once a month. Equip yourself on what you will do if you lose more hair —have a plan. Then just enjoy life❤️. I haven’t found anyone yet who has pseudopelade, so, if anyone out there does, I’d love to hear your story. Email the CARF office to connect us.