My bone marrow is slowly turning into tumors. I break bones (micro fractures) as I walk, move, exist. Even if I don't move, my bones balloon out due to the tumors and they can just... pop.

So long as I'm having a good day, I can live with a 5-6 with pain medicine. That'd easily be an 8 for most folks, as it feels like my entire body is on fire being crawled on by spiders with knives for legs.

On my bad days, I can't get out of bed too well. It's an easy 8-9 on my scale. It feels like every bone in my body is broken at that point, and it might be due to micro fractures. That'd be enough to make a normal person lose consciousness.

I've had a 10 before, but that's when I was skinned alive after a skin graft that healed to bandages. They took the bandages off and didn't realize the skin healed into them, so they just pulled off my skin exposing the muscle and flesh. They had to rush me into an operation as I was screaming myself horse due to pain.

On my worst days I'd do anything to stop the pain, short of harming myself. It's groups like this that have helped me more than words can say.

[–] [email protected] 5 points 1 year ago (1 children)

I am so sorry this sounds horrible. No one should have to go through this.

If you don’t mind me asking, are the tumors cancerous or just growths?

[–] [email protected] 7 points 1 year ago (1 children)

I don't mind. One of my life's missions is to make more people aware of this rare genetic disorder.

The tissue is like a fibrous benign tumor. My body can no longer produce bone marrow since I hit puberty. Though there's about a 1 in 6000 chance of this becoming malignant cancer

Thankfully I can't pass it down, as it's a random mutation that happened in the womb.

For the most part there are two kinds the poly version and the mono version. Mono has this issue just in one bone or in the knee, but just one spot. Mono is super rare, but the poly (the multi bone version I got) is even rarer. You can have McCune-Albright and not have bone issues, but bone issues usually come with McCune-Albright

The McCune-Albright is the worst part to get though, IMO. I can get on disability and get all the pain meds that I want until the day I die with the bone portion of the disease. Yeah, it sucks to suffer in agony the rest of my life, but at least I have a life.

McCune-Albright causes your endocrine system to randomly go hyper, hypo, or parts just shut off for no reason

That means my type 1 and 2 diabetes almost kills me once a year no matter how well I take care of it, my testosterone was a 7 before treatment (about 700-ish is normal), my Thyroid is all befuddled. Then it suddenly fixes itself, and then it does the opposite.

All in all, it's a hard condition to live with. There is maybe 10k-15k worldwide with the mono version, and only a handful with the poly version like myself. And I know about 50 of them, which may be a significant chunk of English speakers with the disease

Really, the only way that I got lucky was I'm not really badly disfigured. I look almost normal. It's just my insides that are severely disfigured.

[–] [email protected] 3 points 1 year ago (1 children)

You got dealt a very heavy hand. I’m glad you’re still here kicking it with us. I can only imagine how hard that is. At least the cancer risk is pretty low but everything else sounds not fun at all.

Since this is so rare have they done studies on you to learn more about it?

[–] [email protected] 4 points 1 year ago (1 children)

There's a 'community-driven nonprofit' that all of us put together and run called The FD/MAS Alliance

We all raise any money that we can and funnel it into genetic research to find a cure for this monstrously life altering condition.

Being able to pool our money like that and apply for grants allows us to hire doctors and labs to look for a cure. Fingers crossed with CRiSPR!

[–] [email protected] 2 points 1 year ago

Good to know! That’s for sharing

Crispr is some insane engineering and will and is changing the medical field everyday. I really hope they find something for you!