It’s time to get Real…I’m Losing My Hair. Please Read & Share My Story

I’ve been thinking about writing this post for months, I’ve even wrote a few that I didn’t feel comfortable posting. But it’s time to get real. It’s time to face the truth and share my story. I have a rare disease. I have Lichen Planopilaris. It’s a form of Cicatricial Alopecia. I am permanently losing my hair. One day I might be bald. One day soon I will have to start wearing wigs. Here’s my story…

At the beginning of 2012 I noticed some red bumps on my scalp but didn’t think much of it as it wasn’t bothering me so I shrugged it off, thinking it would go away (big mistake!). I became pregnant with my son and had him in June 2013. After he was born, I noticed the hair on the crown of my head was a little thin so mentioned it to my doctor. I assumed it was due to hormones from my pregnancy and never connected it with the inflammation I found a year and a half prior, I had actually forgotten all about it.

My doctor ran a bunch of tests….fungal infection, thyroid, celiac and more. After a few months of tests and trying different creams with no results I was referred to a dermatologist. I was put on a waiting list. It took over four months. When I finally saw the dermatologist he didn’t give me the time of day, barely looked at my head and wrote a prescription for Rogaine, blaming my thinning hair on hormones as I had initially suspected.

When I went to the pharmacist, they said I couldn’t take Rogaine because I wanted to get pregnant again. I got a second opinion. The second dermatologist I saw in September 2014 took the time to examine my scalp and wanted to do a biopsy. I couldn’t get an appointment until December that year.

On the morning of my 30th birthday I had my biopsy…Happy Birthday to Me! I got the results in January 2015 and was diagnosed with Alopecia Areata. After sending the biopsy results to my dad’s cousin who is also a dermatologist in another province, we changed the diagnosis more specifically to Lichen Planopilaris, 3 years after I noticed the initial symptoms.

I’m not writing for pity or anything like that of course, I often feel guilty about getting so upset with my situation because I’m generally healthy, it’s not terminal. But it took me 3 years to get diagnosed. 3 years of permanently losing my hair before I started to receive treatments. I’m writing because I hope you will read and share my story so people will become more aware of this disease. So if someone notices these symptoms they go to their doctor immediately and hopefully their doctor will recognize the symptoms and refer them right away because early intervention is the only hope to save your hair.

My scalp burns. It itches like crazy. I’m terrified of scratching it because when I do, more hair falls out. When I lose a hair, I usually lose the follicle too, having it replaced with scar tissue so it can’t grow back. Every 3 weeks I see my dermatologist for Cortisone injections…usually about a dozen needles jabbed in my already sensitive scalp. Between visits I apply a Protopic cream twice a day. I hate this. It forces me to stare at my balding scalp and apply cream to it, greasy cream so my hair is never nice and soft anymore and it makes it harder for me to hide my exposed scalp. The cream also has some side effects which doesn’t help it get in my good books. It causes my scalp to be even more sensitive, I can’t be outside in the sun for more than a few minutes without my scalp feeling like it is sizzling. I have to wear a hat and am getting in the habit of carrying one on me at all times as I barely made it into the grocery store a few weeks ago, grabbing the shopping cart and loading my son in took too long in the hot weather. There is also a very rare side effect that causes it to mix badly with alcohol and I am lucky to experience this on the rare occasion. Sometimes when I have a drink I get extreme hot flashes to the point that I can’t concentrate on anything.

As well as the steroid injections and cream I use the Body Shop’s Ginger, scalp repairing shampoo, gentle, paraben free conditioner, I take B12 supplements and have a cream I can apply if the itching becomes unbearable between shots.

That pretty much sums up the medical side of it all. Here’s a little about the personal side of permanently losing your hair…

It’s humiliating. I don’t like to think of myself as a superficial person but a woman’s hair is part of her beauty and when you know you’re losing that, when you look in the mirror and don’t recognize a part of your body anymore, well it’s not a great feeling.

It’s sad. I am mourning the loss of my hair and in doing that I seem to be going through the traditional stages of grieving. Before I had to apply the cream I was definitely in denial. There have been a number of days where I’ve broken down and cried, probably confusing my son. I wish I could be told a reason why I’m losing my hair, I’ve always been very careful not to use a lot of products but there isn’t a known reason. Some people believe it’s an autoimmune disease but I’m told that’s not definite. The way my mind and personality works is I need a purpose, so in writing this and with your help to share my story, I can at least feel that spreading awareness about this rare disease can help others and through my loss and suffering, hopefully others can be spared.

It’s painful. I already shared a bit about how sensitive my scalp is with heat but it’s also little things. It’s excruciating when my son’s little fingers get caught in my hair or he accidentally pulls it. Sometimes , after a few attempts, I have successfully put my hair up and covered all the bald spots but the hair is pulling and it’s too painful so I have to start again. Sometimes I just have a constant dull pain in the back of my head.

It’s anxiety provoking. I’ve never considered myself an anxious person but as I lose more and more hair I become more and more anxious about things. Instead of getting excited to get dressed up and go to a formal event with my husband, I worry about my hair and wish I didn’t have to go. Our good friends are getting married outside this summer and as happy as I am for them and their special day, I can’t stop stressing about how I’m going to sit outside while they share their vows. Our photographer only does family photos outside in the summer. Will my kids be embarrassed when I take them swimming and I can’t wear my wig in the pool? I’m self conscience sitting in rows like at church, worried if I did a good enough job hiding my scalp, worried they’ll notice.

I’m partly writing this because I want people who know me personally to know why I am experimenting with different styles of hats…and if I’m wearing one that doesn’t suit me, please tell me! I can still hide my balding scalp when I wear my hair up but it is getting more and more difficult to hide so if you see me and see my thinning hair parted with my scalp exposed, please tell me so I can fix it. When I find the courage to go wig shopping, you won’t have to ask why my hair is different, you will have read this and you’ll know why I have to wear someone else’s hair on my head. If you see me outside without a hat and I’m running like a mad women with my hands on my head, you’ll know it’s because it feels like my scalp is melting and I’m running to find shade or shelter. If you have any questions please ask me here or in person, but please know that although I’m getting better, I still struggle talking about it without crying, I’m ok with crying, I just want you to be prepared and maybe not ask me in a very public place!

Looking on the positive side of things, I’m so grateful for the love and support I’m receiving from my husband and the friends and family who know. I’m grateful to be able to work from home, blogging and making things for my Etsy Shop because I used to work with young children and I don’t think I could face their honest curiosity…“Miss Rachel, I can see your skin” “Miss Rachel, are you bald? “Miss Rachel, are you wearing a wig?!” “Miss Rachel, why are you crying?”. I’m grateful for the medical help I’m receiving and for Canada’s Healthcare system. I’m grateful I only have hair loss on my head, although a little on my legs wouldn’t hurt if I didn’t have to experience all the itching and burning pain that goes with it! When I first noticed my thinning hair I would say, “I’ll figure it out, going bald isn’t an option!” But now, the reality is, that’s my only option unless we find a concoction of medication to control my hair loss which we haven’t been able to do so far. Although I’m still adjusting to this reality, I always remind myself, it could be worse, I still have a lot to be thankful for.

So please please please share this post, spread awareness of this terrible disease so it can be treated early. Please pray for all the doctors and researchers treating Lichen Planopilaris and everyone living with this disease. And please don’t stare if you see someone with a strange balding pattern on their scalp, either they’re brave enough to walk around with their thinning hair or they don’t know it’s showing. Thank you for taking the time to read my story.

Lichen Planopilaris...permanent hair loss

Please read and share this story to bring awareness to this rare condition.

  This is the crown of my head when my hair is down, you can see the inflamed redness on my scalp where the disease is still active and I’m still permanently losing my hair.

Here’s a more recent post for an update on where I’m at now!

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16 thoughts on “It’s time to get Real…I’m Losing My Hair. Please Read & Share My Story

  1. I was hoping to connect. I currently suffer from Vitiligo ( loss of pigment ). I read your story and it’s crazy how much I feel the same. Anyways thought it would be nice to chat.

    Thanks
    Laine

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  2. Hello. Very brave of you. I also have Lichen Planopilaris (LPP). I’ve been able to get many of the symptoms of this under control using the Paleo Diet and using a homeopathic remedy called “Sssssting Stop” topically whenever I had a flare up. Non toxic, no side effects, and has worked better than anything else I’ve tried. After 4 years of Paleo, I have no more pain, no more itching, and my shedding has gone way, way down. I also take a lot of supplements. I’ve been where you are, I’ve done all the shots, plaquenil, etc. and this diet has helped more than any of it. If you’d like more information, feel free to contact me. Ellen

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    • Thanks Ellen! I’m so happy to hear you have your symptoms under control! I have researched the Paleo diet and from what I understand, for autoimmune/LPP you need to do a more intense version of the typical Paleo diet? When I would search for Paleo recipes, they still contained food on the don’t eat list of this specific Paleo diet so I got discouraged and haven’t pursued it as I found it so difficult to come up with meal ideas for my family!!! I would love to get more information! My email is myraecreations@gmail.com. Thanks! 😀

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      • Try the AIP Paleo Diet( auto immune protocol) . I also have linchen planopilaris and have only know for a few month so you story teared me up , thank you for sharing. I have read a lot of people have had great success with AIP along with vitamin D , vitamins B12 , folate , bone broth and a good probiotic as some doctors think it’s linked to leaky gut , but it’s a long slow process and we will never get what we lost be we can stop it from getting worse or changing into linchen planus . Thank you

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    • I’m on the Autoimmune Paleo diet. I just got diagnosed at 43 and I’m freaking out!! I wanna cry every day. Gotta stay strong for my kids. I also have Hashimoto’s thyroid disease so autoimmune diseases go hand in hand.

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  3. […] and I was anxious about being outside and having to wear a hat to protect my scalp due to my Lichen Planopilaris. Thankfully, our photographer made an exception for us and allowed us to do an indoor session, but […]

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  4. […] For more information, check out my story! […]

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  5. […] since September is Alopecia Awareness Month I would write about my hair loss again. I revealed my hair loss in a post in June and had amazing support and feedback…THANK […]

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  6. It was interesting to read your story. My daughter was diagnosed on her 17th birthday January 2015. She has adverse effects from any cortisone or steroid medications so she has little relief from the pain.

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    • Hey! I’m so sorry to hear that your daughter is still suffering with LPP and it’s symptoms. There is a private group on FB where people share a variety of different treatments…medical, natural, diet, etc. which I have found to be a great help and support. Please contact me privately for the name of the group if you’re interested and unable to find it!
      myraecreations@gmail.com

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  7. […] I’m Losing My Hair […]

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  8. Thank you so much for your story! a year ago I was diagnosed with LPP!! I hate it! So much of what you wrote is how I am feeling. It’s scary and I am scared. Some days I am ok and some days I just want to shave my head and be done with it. It is sad that there really is not research on LPP and most doctors just want to push it off as thinning hair and a part of the aging process. So much i could write here but mostly I want to say thank you for sharing and being so brave!

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  9. I happen to sort of stubble my way across this post through searching facebook about lichen planopilaris but I am certainly glad I did. It’s amazing you know how few people you can find out there with this or at least going through it and willing to talk about it so big props to you! I was diagnosed in october officially after the results of my biopsy (though I had been suffering from slow hair loss without knowing it’s cause for nearly 5 years). It was definitely not the answer I wanted. I spent years thinking well maybe it was because I used to dye my hair so much, or maybe it was just from having both my girls, or maybe I was even starting to develop a thyroid problem like other women of my family. I kept thinking if i could just know why it was thinning and falling out I would feel so much better. But then to be told it was lichen’s and that it wouldn’t grow back even with treatments, that was just crushing.
    My derm wanted to treat it very aggressively which at first I was all gung ho for till she said she wanted to use plaquenil as a long term medication which has some pretty heft possible side effect and includes needing to have your eyes examined every 6 months to check for retinal toxicity and to have your liver tested ever 6 months as well to make sure it isn’t being damaged. After heavily weighing out the options I couldn’t allow myself to take such a large gamble with my over all health when I knew the lichen’s was not going to in danger my life or compromise my quality of life. At most it was only going to hurt my self esteem but I felt like I could learn to cope.
    So as of this past week I have stopped all the medications and cremes and to be honest it kind of feels pretty awesome not to have to wake up every morning and rub my giant thinning scalp lol Right now I am just working really hard to focus on all of the good and learning to love myself even more, even if that means one day bald.
    But you have no idea how much it helps knowing and finding other people with stories like mine. Ever since I was diagnosed I started trying to find support groups and all sorts of things but since it’s one of the more rare hair loss conditions it’s like either there just aren’t enough people out there or people are too ashamed and embarrassed to come forward to try and connect with one another. Which I find very heartbreaking since…well it makes you feel incredibly alone. Even with support of friends and family and loved ones. None of them can quite understand just how it feels emotionally having to come to terms with losing something of yourself, especially something so strongly related in the eyes of culture all around the world as a big aspect of feminine beauty.
    So thank you again for being brave!

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