Genetic Diseases

[Simon]

I'm wondering if any other guys have a genetic disease/disorder that they deal with? I have a rare genetic condition that causes tumors in the brain, spine, eyes, kidneys, etc. I'm kinda paranoid about typing the name of the illness here because it would be my luck google would bring this up when someone searched for the disease. (if anyone wants to know the name of it pm me)

In a nutshell, everyone is born with a tumor suppressing gene in their DNA and I wasn't. It only becomes cancerous in the kidneys but the tumors must be removed before they reach a certain size and  metastasize. I've had a spinal cord tumor removed before it ruptured. The good news? I'm getting my hysto for free but I'm sure others have gotten theirs for free by easier means, lol.

It's a different experience being trans and having an illness. I got over modesty and embarrassment over my body a long time ago. Constantly being poked and prodded by medical professionals will do that. Now I have finally been given the go ahead to start transition (the hysto is because they're removing an androgen causing tumor).

I really want to get connected to the trans community as a whole but I would be elated if I also found others who understand what it is like to deal with other issues on a regular basis...

...is there anyone else out there?

[Darth_Taco]

Uh...I have asthma. I don't think that relates though since so many other people have asthma XP. It sure as hell makes binding suck though, especially right now because I have a lung infection @_@. My asthma makes minor things like this a million times worse than they should be XP. I'm also physically disabled. I was in a car crash in 2009 (not at fault), and I was left with my spine kind of messed up XP. It makes walking annoying, but I manage. There's also my kidneys. I have nothing specific at the moment, but they really like to give me problems on a regular basis @_@. Kidney failure runs in the family, so I'm not looking forward to that XP. I also have more allergies than I can count :'D. The running joke is that I'm allergic to existence :'P. I think that's it.

[DriftingCrow]

There's MichaelsJourney87 on youtube. He has some rare disease that the doctors aren't even sure what it is. I am sure he'd be happy to connect with you.

[AdamMLP]

I've probably inherited palmoplantar keratodermas from my mother, but it's not really serious at all.  I just end up with way too much hard skin on my feet and a little on the palms of my hands.  My mother, and her mother, just thought that they were very prone to getting corns until a doctor finally worked out what was wrong with her -- in fact my nan still thinks they're corns, she doesn't understand that hereditary means that she gave it to my mother, not just that my mother might  have given it to me.  There's nothing that can be done though apart from burning it off with putting small doses of acid on your skin every night to burn it off, so I'll not be going to see anyone about it.

[Adrian_Michael]

I have a genetic disorder called ankylosing spondylitis. Basica it's an arthritic condition that attacks the hips and spine, and can get to the point where my breathing could be restricted due to a reduced flexibility of my rib cage and my spine can fuse.

Currently it only causes a lot of pain, lots of dance and rock climbing has kept my spine and hips flexible, but I have moderate arthritis in my sacroiliac joint.

I haven't even begun to start the process of transition, but fear my condition will inhibit some things, like HRT.

[Shang]

I don't have a genetic condition, but I have chronic inflammatory demyelinating polyneuropathy directly related to Guillan-Barre Syndrome (which popped up when I was 3).  Essentially, my immune system will attack my nerves if I become sick (it doesn't always happen, but it can happen with something as simple as a cold though strep and the flu seem to be the big triggers).  As a result, I have partial paralysis in both legs and one hip along with muscle damage in my arms and hands.  It can make things relatively difficult on a daily basis as I tire far more easily then someone my age should.  I also have other physical limits caused by it.

It's not genetic, but it causes a fair bit of problems and means I have to be very careful when dealing with sick people or anything else that can potentially cause me to become sick.

It shouldn't be a problem when it comes to transitioning other than that it causes me to be unable to change my gait (that of a horse which in turn gives me that silly model walk) without the the threat of losing my balance.

[Simon]

Wow, I just woke up (I'm on the East Coast...and rather lazy, lol) and really didn't expect to get any responses. I mean I am sorry you guys have crap you deal with too...but on the flip side it is comforting to know I'm not alone.

When it comes to the trans community I've always felt like an outsider. Years ago I went to a local support group and never went back to another one or even spoke to another trans person. Like I've said my illness caused a androgen producing tumor. When you're in a group they usually go around and you have to introduce yourself. Every guy was saying if he was pre T or how long he had been on it. Well, when they got to me I stated that I have never been on T. That brought about looks of disbelief and questions (I look/sound like I've been on T for 4 to 6 months. I've had such a low dose naturally in me 300 range for so long that I have a beard). I explained about my tumor and some of the guys snorted. One looked at me, smirked, and said "aren't you the lucky one". Of course me being me I replied "yeah, tumors are totally the way to go to get T, idiot". Never went back after that day and always felt disconnected.

It started out on the right side and the Hospital used me as a guinea pig (as usual) and only would do a right oophorectomy. This was in 2008. They did put an IUD in me so if estrogen came flooding back in I wouldn't have to deal with shark week. Now they are giving me a complete hysto and oopho because the left side has decided to sprout a tumor and there is also a tumor behind the uterus. That is the one I am scared of. They're not sure if it is cancer or not. If it is cancerous I will have a round of scans and then a possibility of going on chemo. (I've never had chemo just multiple surgeries so far).

If you look at me you wouldn't think there is anything wrong aside from some wicked scars I have (I strangely like those,lol). I also have a gimpy right hand from spinal cord surgery so I made myself left handed. The thing is with this upcoming surgery in a few weeks I am not focusing on the fact that it may be cancer. I can't or I will go insane.

My personal struggle has been so long to start any sort of medical transition. The hysto will be done in 3 weeks and they are starting me on T two days afterwards. If the tumor is not cancerous I will have the ok to get my top done (I'm saving all I can but with me fighting the State for disability and my gf in College money is tight) as my other tumors are stable right now (no growth or changes in them). Regardless of the outcome of this surgery coming up I am starting T finally and I have to be on it the rest of my life. There is nothing that can take that away from me. That has to be the most awesome feeling.

Just wanted to share a bit about myself with you guys and what I'm dealing with. It's nice to feel like there are other guys who understand. Regardless of the challenges, the struggle to become ourselves despite those obstacles is what connects us.

[Natkat]

I know alot of people inside and outside the comunety who got something.
I dont really got any illness but I have a couple of dignose status behind me which im unsure to be true or not.

We are diffrent and a good comunety would understand and accept that.

[Shang]

@ Simon:  There are always rotten apples.  I'm sorry that people said that to you.  Some people just don't grasp that medical conditions can be dangerous and don't understand that just because it might appear as if there's a benefit to something doesn't mean it's all good, especially in the case of tumors or cysts. 

But, not everyone is like that thankfully.  And it's always good to look at the silver lining.   Good luck in your surgery!  Take it easy afterwards (no heavy lifting as my mom would say, lol.)

[eli77]

Not a guy, but. I developed a chronic pain condition when I was 16. Same thing that one of my aunts had, but she grew out of it in her early 20s. And my grandfather on the same side of the family had it his whole life, but not quite as bad? Or he just handled it better maybe. I never got to meet him. He died pretty young.

It's weird having it be invisible, nah? I look like a normal person, aside from the dark under my eyes from the insomnia (it's hard to sleep when you're always in pain). My best friend has muscular dystrophy, and he tends to refer to us both as disabled, and I always feel really weird about that. Like... I don't have a right to that label or something since I seem fine?

And the whole "poked and prodded," ya. I spent 2 years going around to a zillion different healthcare specialists trying to find something palliative so I could function. I did eventually, but not before my medical file turned into a brick. My parents (my mum in particular) were kind of horrified by the idea of more medical crap to deal with when I came out, but I guess I'm kind of inured to it? And my high pain tolerance has been helpful.

I explained about my tumor and some of the guys snorted. One looked at me, smirked, and said "aren't you the lucky one". Of course me being me I replied "yeah, tumors are totally the way to go to get T, idiot". Never went back after that day and always felt disconnected.

That is incredibly screwed up. People can be so horrible. I'm so sorry you had to go through that.

[Apples Mk.II]

It's weird having it be invisible, nah? I look like a normal person, aside from the dark under my eyes from the insomnia (it's hard to sleep when you're always in pain)

That absolutely sucks. I have learned to tolerate a pain treshold thanks to my bad back, but the difficulty sleeping...


In my case, my biggest fear is psoriasis. It's hereditary, and my father has been fighting it for more than 25 years. Skin, nails... I keep checking my skin and panic every time I see something weird.

[Shang]

It's weird having it be invisible, nah? I look like a normal person, aside from the dark under my eyes from the insomnia (it's hard to sleep when you're always in pain). My best friend has muscular dystrophy, and he tends to refer to us both as disabled, and I always feel really weird about that. Like... I don't have a right to that label or something since I seem fine?

I can see feeling weird about it.  I'm disabled (even have a neat handicap placard).  However, it's almost entirely visible as my body has learned how to mask the funny gait as I grow older and other muscles learn to compensate for the ones that don't function appropriately.  As a result, I am constantly getting glares whenever I use my placard (which is rare since I only use it if absolutely necessary) because other people can't see it.  I don't use a cane and I'm not in a wheelchair, but the disability is still there.  I mostly feel weird because I know no one else can see it, or at least they don't pay attention. 

[Simon]

I agree with you both. Having a disability is strange when others can't see it. That makes me think back to my first kidney operation in 2009. I had an open surgery with a 12 inch incision, a jp drain, and 30 staples holding me shut. After a few weeks of being home I wasn't in an awful lot of pain so decided to go grocery shopping with my gf at Walmart.

We get to the store and I know there is absolutely no way I am going to be able to physically walk throughout the giant store. I decided to suck up my pride and use one of the motorized carts. Now I'm a rather healthy looking guy. I'm 5'8" and at the time I was working and almost 210 pounds solid (well, except for the gut, lol).

We get into the store and I sit in one of the motorized carts. No sooner than my cheeks have touched the seat we hear "Sir! Sir! Don't play on the carts, Sir!". I look to my right and there is a older lady coming at me full steam ahead with this "gotcha now, punk" look on her face. She stops a foot in front of the cart where I can't move it, hand on her hip, and asks if I NEED to be using that cart. I'm somewhere between amused and annoyed at this point because people had stopped to stare.

I slowly stand up without saying a word, pull up the right side of my shirt and say "Does it F***ING LOOK like I NEED this cart?" Needless to say...I got to use the cart, lol.

People are VERY quick to judge others and I am sure they had young guys playing on the carts in the past. If anything I am sure that lady will choose her reactions much more wisely when questioning someone if they are in need of a service or not.

[Adrian_Michael]

It's weird having it be invisible, nah? I look like a normal person, aside from the dark under my eyes from the insomnia (it's hard to sleep when you're always in pain).

It's beyond weird. To me it's disheartening sometimes.

Especially since, with me, on really bad days I need a set of crutch canes, but on good days I can skip my butt into the store.

Okay, maybe not skip, but at least walk normally.

I get the nastiest looks sometimes.

I used to park in the handicapped spot at my college. One day this old bitty comes up to me hissing "Why you parking there? You look perfectly healthy. All these damn young kids using their grandparents' plaques and ->-bleeped-<-..."

I looked at her and said, "Bitch, my cane is in the car, I'm having a ->-bleeped-<-ing good day, but these spots are still 100 yards from my class, so I have to be careful. Also, this "young kid" has a degenerative spinal condition and arthritis in my spine and hips, that is getting progressively worse and has no cure. So next time you want to pass judgment, walk a mile in my abnormally restricted body and don't forget to end 20 feet past the edge of a cliff."

She stood there for the entire time I eased my way into the school, with her mouth on the ground and her eyes wide.

Two days later I had a flare up and was inching my way around the school with both crutch canes and a helper. She saw me and the pained expression on my face, stopped dead in her tracks, turned around and walked away.

[insideontheoutside]

I'm very thankful I don't have a serious medical condition. I've got some "quirks" including not being able to take T as it gave me weird side effects. My hormones are all wacky. And I have weird reactions to lots of different meds. I can't even have the regular stuff when I get teeth fixed at the dentist. The other stuff I deal with is mostly my fault (like falling off a 1 story balcony while drunk and messing up my shoulder or cracking my pelvic crest snowboarding) but still that doesn't hold a candle to what some of you guys are dealing with. I know you originally posted this to find others dealing with health conditions but I think it's a good read to put things into perspective and be an inspiration to other guys to not let the cards you're dealt stop you from living life and going after your goals.

[Simon]

I'm very thankful I don't have a serious medical condition. I've got some "quirks" including not being able to take T as it gave me weird side effects.

Eh, it is what it is. I never think what I have is worse than what anybody else has. I hate to hear that you aren't able to be on T. That to me is worse than what I'm dealing with. I continuously got told to wait...wait till after this next surgery...wait until you get this test...wait, wait...you guessed it...wait, lol.

I dunno, I just look at things for what they are. I do think being trans is just as much a medical condition as the other junk I deal with. I went through a pity party time. What snapped me out of it was seeing the little kids with cancer at the hospital I go to. They run around with their little bald heads and huge beautiful smiles on their faces so really, who am I to complain.

We can ALL beat this trans thing. It is just different circumstances and it takes time. 

[Miniar]

I don't think it's considered a disease, but I inherited pretty severe hypermobility from both sides. May sound like a superpower to be super limber, but it's not. My joints have no real stability. :/ So everything's sore all of the time. Swollen sore muscles in the face that get aggravated and sore if I speak... or eat... and I've got rheumatoid arthritis to look forward to, aught to show up in 10-15 years or less.