I am diagnosed with a one-in-a-million rare genetic disorder. (Mccune Al-bright syndrome)

re-reading my post made me realize how much self hatred i have :( i’m sorry if someone feels uncomfortable reading that, i just as i said this was my first time to ever talk about this so i was just raw with my feelings.

There is a German youtuber called I'mJette who has Fibrous dysplasia and has an asymmetrical face as a result too. I recognize that you probably don't speak German so you won't be able to watch her videos about that but I feel like it might help you to see her channel in general because she was able to come so far in an industry in which the way you look can be everything. I think it really says a lot that you recognized the self hatred, that seems like a good first step towards getting better. You are beautiful the way you are! If you ever need someone to talk to about this, feel free to dm me.

oh my god. thank you so so much. You have no idea how much this helped😭

AW the original post is gone!

yea, mod texted me saying the only acceptable proof i could be giving is medical paper work which i don’t have in-handy right now so :’)

Have you thought about maybe seeking counselling or therapy to help with how you feel?

Yes. I know i need it. not only is it extremely costy here but my parents see someone going to therapy as it’s something to be ashamed from, trust me i’ve tried. :(

So this is rude, but fuck your parents. They should be more concerned about making sure your ok, and not how it may look from an outsiders perspective.

Are you able to sit them down and explain fully how you’re doing, and how therapy would probably help your mental health? Like, are they receptive of you’re attempts at all?

i’ve tried to in my senior year. had a long talk with my mom about everything (it’s not only this btw), it was a big thing for me to do, but She did not take me seriously whatsoever and just went like (you should go and pray, this is why you feel like this and blamed it on me. something like that. it’s hopeless.

This is fucking heartbreaking to hear. Praying probably won’t do shit. Issues need to be addressed before they become worse.

Are you able to do online counselling or therapy without your parents knowing?

Yea haha. it truly is heartbreaking, and what’s even worse is that it’s not only my family that are like that. but the entire society here don’t believe in mental illnesses and disregard it as “lack of faith”. and yes, i’m tired of feeling like this. will definitely get online counseling or so once i get financially stable. thankyou for your concern 🙏🏻.

My girlfriend has the same condition. She is quite lucky to have just some mild deformation of the skull and nothing regarding the arms or legs. We read that some people have the fibers around the hips or knees and can't walk that well. Do you have any of that? If you're interested in talking to someone else with the syndrome, shoot me a PM. I can put the two of you in contact.

thankfully not, it’s just around the eyes/skull area.i’ll be DM-ing you. knowing someone else has the same condition as me is so relieving to hear. Thank you so much. 😭🙏🏻

Hi! I have the same condition and while my experience hasn't been super similar I definitely understand feeling out of place and wanting to know what life is like without this mutation. My inbox is open if you would ever like chat some more!

How old were you when you were diagnosed vs. when you were ready to talk more about it?

omg, I’ll be DM-ing you if you don’t mind! also, just an assumption, that i was diagnosed when i first menstruated although i was very little i still remember some of the hospital trips😅 and the second part of the question about feeling comfortable talking about it, haha that would be right this second. I truly had no idea what was wrong with me, didn’t even had the slightest idea about a “genetic disorder” all until right now.

Genuine question: What if you stopped hiding it?

I looked at the photos, and sure, your bone structure is different. People will glance at you because it's different, and kids were terrible to you because kids are tiny monsters, but that doesn't mean every adult in your life will act badly or reject you. Most of us have seen plenty of people with unusual features, scars, or birthmarks. It's different, and our brains prioritize focusing on the differences in our environment, so we'll look, but that doesn't mean sane and well-adjusted adults will go "wow, that person has unusual bone structure, I better loudly insult them!" (that would make *us* look like crazy assholes), or "wow, this person has a few unusual features, so all the rest of their attractive features don't count." Most people won't rule out a prospective partner with attractive-to-them features just because that person has scars or a limp or a missing limb or whatever. Not everyone will find you attractive, but not everyone will find *anyone* attractive.

If you stop hiding it, then you no longer have to fear anyone finding out about it. Wouldn't that be a huge, huge relief of anxiety? Wouldn't it be amazing to not have to care about how you held your head on a windy day?

Sure, there might be a few assholes who react badly. That sucks. But there are also going to be people who genuinely don't care, or who care briefly and then get over the differences pretty quickly. If you hide from everyone, you miss out on all the people who wouldn't mind and you have to imagine that *everyone* is an asshole. If you stop hiding, the few assholes will be obvious, and you'll be able to interact with everyone else freely.

You'll probably make friends who enjoy your personality and don't care if you have dark marks on the back of your legs. (I looked up what the McCune-Albright Syndrome café-au-lait spots look like, and honestly, they're fine? Like, differently-colored sections of skin are unusual but not *that* rare. People have vitiligo and scarring and birthmarks and all kinds of things. It's not horrifying.) Some of those friends might even be attracted to you! Even in really shitty image-focused societies, people have different tastes and tolerances for unusual features.

Don't assume everyone is acting out of pity -- people are pretty selfish, and if they're spending time with you and even giving you compliments they're either sincere or *really* weirdly wasting their own time, which isn't your fault. It sucks that the kid in high school gave you such an awkward compliment, but what if he really did think you had pretty eyes? Like, "hey, your bone structure is unusual but you have great eyes." Maybe you just need to accept the terrible reality that you have nice eyes!

I truly wish it was that easy. I always try, i truly do, but it’s something i’ve been struggling with for so long it’s almost impossible to just flip the switch and to stop caring about it. but definitely something to work on. thank you so much for writing this, truly appreciated💖.

Umm, I’ll be honest with you - you do look cute! You have great hair, beautiful eyes and gorgeous skin tone :) Trust me, you’re focusing on the negative part too much!

I’ve noticed that therapy is costly in your area, but have you tried reading books on self-therapy? There’s one called ‘CBT for dummies’, I highly recommend it!

Thank you so much🙏🏻 truly appreciated. I’ll definitely be looking into the book you recommended, i love reading!

I’m sorry that it’s been hard for you. The other good comments here have said what I would’ve suggested for you, especially therapy.

Since you can’t see a therapist yet, is it possible for you to purchase books to read in the meantime? There are a lot of great books and workbooks out there to help people deal with and overcome many things. Perhaps you’d find one or a few that you’d like, which could help.

Some people do well with daily affirmations said to themselves while looking in the mirror, and then throughout the day. “I love and accept myself.” “I am pretty.” Those types of things.

I can’t offer other than these because self acceptance of my appearance is something that I struggle with, too. I was abused and bullied as a child, so understand how much effort it can take to change the negative thoughts. I know that you can, though!

Looking up your diagnosis, I wanted to add that you should make sure that the doctors are regularly testing your growth hormone and pituitary. Some doctors are better about monitoring things than others. I have a rare autoimmune disease which needs monitoring, so know if what I speak.

From what you’ve written here, you sound like an I intelligent, sensitive, caring individual. I wish for you that you find peace with your appearance. You need to know that we’re our own worst critics, and most people never see the flaws that we see in ourselves. Shine your light brightly and never let anyone dim it for you. I wish you well.

thank you so much. and it probably does need monitoring, but that hasn’t been the case unfortunately:). i think the last time i visited the doctor was a good 7 years ago. and i do experience alot of sudden health problems but i don’t usually think too much into them so😅. thank u🙏🏻

Did it affect your height because you hit puberty very early?

yes! but only at the beginning. i was the tallest person in class throughout elementary school. But then i stopped growing and evened out during middle school/ highschool.

Do you take any medication to prevent bone density loss?

no. just multivitamins

Hi JKpouting, your post has been removed because:

Your post has been removed because it lacks adequate proof.

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just edited the link of the picture in the post:)

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i’m sorry. i already apologized about it being long because this was my first time talking about this with anyone. You didn’t have to be rude about it :(