alopecia

It is hard to tell in this photograph, but Ariel was signing to me! I am hard of hearing and there are times where I have to use ASL for communication. My mom told her that I couldn’t hear and immediately she turned asking (in sign), “You are deaf?”. I started sobbing, ugly happy sobs. In the time slot allotted we signed the entire time and it made my trip to Disney absolutely incredible. Think about that. Five minutes of just being able to communicate with a character made the long plane ride, long car ride, etc. worth it. The bonus is that Ariel is my favorite Disney princess. I felt included in a world that is tailored to the “norm” and it meant the world.

Girl with Alopecia by Lumi Tuomi

“Girl with Alopecia” is a self-portrait reinterpretation of the famous painting “Girl with a Pearl Earring” by Johannes Vermeer. “Girl with a Pearl Earring”, said to be the “Mona Lisa” of the north, is deemed as one of the most beautiful paintings. The beautiful pale girl with her light facial features almost blending in with her skin.

It’s almost as the girl in the painting has no eyebrows, no eyelashes and no visible hair due to her turban. To me, as a woman suffering from alopecia and as a woman with no eyebrows, barely no eyelashes or hair, this painting is a celebration. The girl in the painting is a celebration of me as she has features that I consider my weaknesses - yet still the painting is one of the most beautiful paintings in the world. As a human, I look for myself in everything - and I found myself, with all of my faults, in “Girl with a Pearl Earring”.

I hate the lifestyle my illness has forced me to live. I wish I could go out more, be more spontaneous and not have to constantly cancel plans last minute

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Sharing this story has been in my mind for five years that I’ve had alopecia. Alopecia is an autoimmunity disease that causes hair loss to a different extent. I have alopecia areata, which symptoms include bald patches on scalp, eyebrows and lashes in my case. For many years I felt alone with alopecia because I was too ashamed of my condition to reach out. At times I was just tired of thinking and talking about alopecia that I ended up hiding it for years even from my closest friends. Many with autoimmunity struggle in hiding like I did but lately I’ve seen people with alopecia sharing their stories on social media. I’ve even gotten to know about others suffering with alopecia in my life. It took me five years to get to this point where I’d rather share my experience than hide it as I realized how important it was for me to see and know others who had alopecia.

I also wanted to share this now since my hair is falling out again and I’m going to start using wigs soon. So much great things have happened already this year and more are bound to happen and I don’t want to spend more time being afraid and ashamed. So from now I’m going to do what I’ve been wanting to do for five years: be more open and keep sharing my experience with living with alopecia💛

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Photos from Sigga Ella’s project ‘Baldvin’ (meaning strength), which features portraits of women of all ages who have alopecia.  

The project was done in collaboration with Iceland’s Baldvin Association to spread awareness about alopecia and “open up the discussion and work against these gender stereotypes”.

Ella says the photo series presented the opportunity to push against the stereotype that women can only be beautiful if they have long hair.

Rules on how to act around people with wigs

So after going back to wearing a wig I thought I’d share some fairly obvious rules on how to act around someone with a wig.

1) Do not stare.
2) Do not ask if it is a wig. It’s none of your business.
3) If the person denies it is wig accept it and do NOT bring it up ever again. They don’t want to talk about it.
4) Do not threaten to pull it off. It will never be funny.

These all happened daily to me and caused me to have constant panic attacks when I left the house so please never do these things.

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“Losing His Hair Made Him a Better Actor”

I feel this is very important. Anthony Carrigan is such an amazing actor and I really do hope I see him in things outside of Gotham, and hopefully one day when he’s not only type-casted as villain characters. He obviously has so much talent and I’m so glad he’s been able to overcome any insecurities he may have had when it came to his alopecia.

Female hair loss

Male hair loss is discussed in the media far more frequently than female hair loss. They are both pretty traumatic, but for some reason female hair loss is forgotten about. I personally have struggled with rapid hair loss over the span of a year or so and have gotten professional treatment and advice, so I feel I’m pretty qualified to give my own advice!

1. Diet, make sure you’re getting enough nutrients (especially iron, that is a big one for healthy hair)

2. Silica treatment, it comes in tablets and gel form (you mix it in water and drink) and will DRAMATICALLY change your hair (and nail!!) strength and thickness, and grow lots lots more.

3. Use really good hair products and use them in the correct way but also the best way for you. Obviously not everyone is in a position to buy super fancy expensive hair products, but try and make sure they have keratin in them, but without silicone. Try doing a hair mask every week (I do one every time I wash my hair and my hair is so silky).

4. Heat. I know its hard, but really try not to use heat products on your hair, this makes a huge difference. Make sure if you really need to use heat to use a good heat protectant product, but the thing is, most of them do not work at all. To test if your heat protectant works spray it on your wrist and then blow dry your wrist. Does it hurt? Well then it doesn’t work.

5. For the love of all that is holy, DO NOT USE HAIRSPRAY EVER OH JESUS. It’s not the hairspray that does that damage, its the getting rid of it that does, no matter how you do it it’s detrimental to your hairs health. Try using a dry shampoo or something lighter for volume.

6. If you’re going through a period of extreme hair loss you may deal with mental health/self esteem problems. For me its been about a year and a half since I started rapidly losing my hair, and most of its grown back but will never be the same. It sucks I know. For me the thing that gave me back my confidence hair wise were extensions and this magical thing called hair luxe. Hair luxe is basically makeup for your hair, it attaches to the hair folicles and beefs up every single strand of hair, its honestly life changing.