I'm a 17 year old boy with multiple chronic illnesses and disabilities. AMA!

So what makes you happy isaac? What brings a smile to your face Hobbies? Interests ?

People! Also theater, particularly opera.

Is your username from Newsies, by any chance?

Yeah!

Does your ideal partner actively work to make you more comfortable, or treat you as if you didn't have any illnesses?

I'd like for them to understand, but not try to make decisions for me. I'll tell them if there's something I can't do.

As a person with multiple illnesses and disabilities, if you could choose ONE that could go away tomorrow, which would it be and why?

Probably EDS. While I think it did help me to become the person I am today, the pain really isn't worth it. I can definitely still live a happy life, but it's a major pain in the neck.

How you liking those headphones? I'm looking at getting a new pair

They're fantastic, although I wish they were a bit louder. The surround sound is fantastic though, and it stays charged for weeks.

Weeks you say? What kind are they again?

I'm not sure whether this is the brand or not, but the side of the headphones say "August."

How's life?

Pretty nice. Been chilling with my dogs, about to audition for a musical.

Is it ok to say break a leg on your audition?

Hell yeah

Sweet! What musical?

Newsies!

Hey man. So what exactly are your illnesses?

Heya! EDS is a connective tissue disorder that affects every system in the body, but for me it mostly affects my joints and skin. My joints dislocate multiple times daily, and I experience moderate chronic pain. My skin bruises and tears easily, although it's very soft and stretchy, which I suppose is a positive trait. I was born with it, but it becomes more prominent with age as my ligaments stretch from activity. ADOA is an eye condition that causes partial destruction of the optic nerve in the first or second decade of life. It also usually causes hearing loss, which I do not have, and sometimes causes MS-like mobility symptoms and spasticity, which I do have. This mostly affects me by the fact that I am legally blind and spent a year on crutches befor PT helped me to be able to (usually) walk without them.

Wow man, that sounds pretty tough. Do you do any physical therapy, or would that do more harm than good?

I don’t mean exercise, but something more like massage?

I'm honestly just glad I was born in a place with semi-decent medical care. And in 2001 as opposed to 1901. I don't do any massage; pressure bothers me sensory-wise. Which sucks, because I could get free massages from my masseuse sister, haha! My PT is mostly muscle-building, because my muscles work twice as hard to hold my bones in place because my ligaments are total freeloaders.

Yeah that was kind of what I figured, sorry man. I know a little about ligaments, they stretch but they don’t really recoil. I guess in your case especially. Like your sister, I also go go school to be a massage therapist, so I was curious if it could do anything for you.

Anyways I really appreciate the answer,

What about simple touch, really light work?

Some EDS patients could probably benefit, but it would drive me crazy, haha!

You said that you don't have hearing loss but you wish your headphones are louder does that concern you at all.

Haha, nah! I have my hearing tested yearly, it really is the headphones.

Do you play any video games? If so, what are some accessibility-related features you wished more games had? (I design games on the side and continuously trying to make them more accessible.)

I love video games, although I'm pretty bad at them, haha! I wish there was an alternative to QTE's because it's very hard for me to see and process the buttons in time to actually hit them. I'm much better with holding buttons and combinations than I am at quickly pressing them.

Are they hatin when they see you rollin ?

They're usually more getting their heels clipped because I'm terrible at timing when to go past people

You're awesome dude.

Hehe, thanks!

It's been six hours I need s l e e p

I'll answer more in the morning if I can, but this response blew my mind. Thanks everyone!

What's for dinner?

Chicken fingers and fries with a mountain dew. I went to BDub's with my mom to watch FIFA. I also put way too much ketchup on everything. It's tasty.

Why is your username morrisdelancey?

I'm obsessed with Newsies! Morris Delancey is my favorite character because he reminds me of what I could have become had I not set myself straight as a kid. I had a rough childhood, including being kicked out of my home, like he and his brother were, according to their trading cards, which likely influenced their violent behavior. However, I lucked out and noticed as a middle schooler that not being a jerk is a lot better in the long run. So he's kind of a reminder that I did something right.

Could you elaborate on the kicked out of your home? Your'e 17. Thats gotta be rough

I used to live with my dad and stepmother. My dad was a pushover, and his wife was the most terrifying person I have ever encountered. I was kicked out on Halloween at 13 for going trick or treating when I was "too old." I now live with my mom and stepdad. It was honestly the best thing that ever happened to me, and they've asked me to come back, but I refused. The only regret I have is not taking my little brothers and bolting sooner.

Have you tried CBD or other medical marijuana related treatments to help with the chronic pain associated with the EDS?

My mom's family actually has a history of allergies to marijuana so that wouldn't work for me. I do support medical marijuana though, it's really helped my paternal cousin with his epilepsy!

Damn man, your Gene roll must have been 1/20

Or 4/20

It’s awesome that you’re doing something like this, it really allows for people to open up their world and learn about what’s out there.

Hope you don’t mind answering these two questions:

1) Out of everything that you’ve been diagnosed with, which has caused the biggest struggle for you?

2) Have you ever tried to learn about the actual anatomical pathways and such of your illnesses and disabilities? (As someone with ADHD, it became a topic of research for a long while so I could learn and understand how and why it happens).

I’m studying to go into the health sector and would love to get a personal insight. You never know, I might come across someone in your situation and I might figure out how to help them through my future profession!

1. Definitely EDS. Chronic pain is far worse than any other symptom I have.
2. Yes! There's much less known about ADOA than there is about EDS, but I research both extensively! In addition I've done so much research on the brains of autistic individuals that I could probably write a book.

What do you wish people knew about you that they don’t or don’t want to know because of your illnesses?

That I'm /not/ as 'typical' as I seem, and that sometimes I need accommodations to get things done. I've had a lot of trouble with access and things at school because my illnesses and disabilities are mostly invisible, and I'm pretty intelligent, so they didn't understand how I could POSSIBLY need accommodations. I've been forced to run laps on a torn meniscus, without my inhaler, I've been locked in a small room for six hours for having a meltdown in 7th grade, I've been asked to leave a school, I've been threatened and bullied by teachers and students, et cetera. This isn't so much because of their malicious intent as it was their ignorance. They mistook disability for defiance and bad behavior. I'm talking about very kind people here, who would not have treated me like a brat if they'd truly understood that I was trying my best.

This is an excellent answer. It is awful, of course, that you've been through all of those things but I think it really highlights a big problem in the world at the moment which is that a lot of people assume that people with genuine disabilities and differing needs are asking for help or adjustments out of laziness, spite or a malicious desire to cause more work for others. When your requests are met with that kind of suspicion, and you are made very aware of how inconvenient your disability is to those who are completely able, it's so demoralising.

Exactly! It makes me think of the news stories about people with invisible disabilities who've recieved harrassment over using their own parking placard because people are simply ignorant. This is why awareness is so important to me; disability is diverse, and people need to be more aware in order to properly accommodate those in need.

What are your dreams?

I mean lat night I had a dream about fruit snacks

What made you decide to do this AMA?

Awareness and boredom

Hey! I also have autism. How do your other conditions affect your ASD? Do you feel like you can handle them better because of it? What are you most sensitive to? Mine is sounds and crowds.

Hey! I feel like my autism does make me more pragmatic in dealing with my illnesses. I'm able to get my emotions out quickly, then move on to trying to solve what problems I'm able to. I'm pretty sensitive to noises in restaurants, especially silverware noises and people talking.

What is your vision for yourself and your future?

I'll probably work a typical day job, either in the medical field or photography. I'd like to do theater on the side, particularly opera. I'd also like to adopt or foster children in the future, but having disabilities can make the paperwork pretty tricky, even if I am fully able to care for kids.

What autism spectrum do you fall under?

I was originally diagnosed with PDD-NOS, then Autism Level 1 under the new criteria. I'm very verbal and skilled with language, but my sensory abilities and comprehension of social hierarchy are pretty off-center.

What's your favorite movie, tv and band?

Movie: Manchester By the Sea. It's a masterpiece. I also really like the new It and Moonrise Kingdom. TV Show: It changes a lot, but right now it's probably either Camp Camp or Once Upon a Time. Band: My Chemical Romance and Avenged Sevenfold! I like the latter's sound more, but MCR has better lyrics with more layers to dissect in most cases.

What do you wanna do after you are done school?

Right now I'm applying for a career school in my area, both for commercial photography and medical lab technology. I do a lot of musical theater on the side as well, but I don't know if I'll ever make it there. I'll sure as hell try, though!

Who has been your most memorable teacher throughout your years of education? And why? What are some tips you would give to a future teacher to better help students experiencing the same/similar disabilities as you?

Without a doubt it has been my 11th grade English teacher, Mrs. Ketch. She has been so helpful and so understanding about missing work, and dozing off in class, and my sloppy handwriting, and just. EVERYTHING. There's no way I'd ever be able to express how grateful I am for her; she's one of the first people to show me that not all teachers are out to hurt you. She always understood my late assignments and gave me full credit when I finished them, she printed off board work I couldn't see, she talked to me and was honestly just a friend to all her students, as well as being incredibly smart and a skilled teacher in general.

Are you familiar with the YouTube channel Special Books for Special Kids?

Yes, it's one of my favorite channels! I like to binge the videos, especially since I'm interested in working with kids with disabilities and illnesses in the future.

What’s your opinion on bread and butter pickles? Personally I think they’re an atrocity and production should be ceased immediately.

Never heard of it but that sounds disgusting.

How do you look at "normal" people their behavior? Is it weirth? Stupid? Random?

Sometimes it throws me off a little! It can be kind of funny to me. A lot of the social conventions that don't come naturally to me I've learned to /understand/, but they seem a little pointless. Things like smalltalk about things I can tell neither party actually cares about. I'm definitely a deep conversations person, so it seems like a weird ritual to me. It's also really odd to me when people get weird about common medical procedures, like vaccinations, or when they seem to be in shock when they see sports dislocations on tv or whatever. I forget that not everyone is used to that stuff, and that it can be scary the first few times!

As one dude with autism to another, how does it make you feel when, despite the fact that by known standards you are intelligent, society will treat you like an idiot. I mean it makes me feel like I'm about to stab someone, but at the same time I feel hopeless. I can't convince this person otherwise that I'm not stupid. No matter what I do, they will say "oh your autistic, don't act intelligent" I mean, that's how I feel. How does it make you feel?

I usually just try to blow their mind with some ridiculously advanced insight and if they ignore it then I'll ignore them.

Are your illnesses linked at all? Like does one cause another? And have doctors ever given you a reason why you have so many chronic illnesses and disability? Are they all genetic and you just got a loaded dice or what?

My EDS is genetic, and my mom has it as well. I have some comorbidities because of my EDS, though! I have mild dysautonamia, so I have problems with things like circulation and temperature regulation. I also have TMJ because of the angle my jaw slips out, and possibly a tethered spinal cord, according to my inconclusive MRI. My ADOA was caused by a mutation. Autism is both genetic and environmental in origin, but I do think that my dad and little brother are on the spectrum, and I know for sure that my maternal uncle and his son are autistic as well.

Are there moments where you lose hope in everything? If so, what do you do? I am sorry if the question is too personal.

It's not too personal, I love deep conversations! I don't lose hope very easily, honestly. I feel like I've been blessed with resilience, and I've also seemed to bypass my family's history of depression and bipolar disorder (although GAD did grab me, rip). There were a few times, however, during my diagnosis process that I became extremely upset and hopeless after appointments where doctors doubted me, tried to tell my mother (who literally has one of the same disorders as me) that I was probably faking, or ""just"" depressed, or even that they plain had no clue what it was and didn't know who to send me to. Those days were tearful car rides home, where I was bitter and frustrated that no one was listening to what I had to say. I had a lot of support, though, from my mom who's been through the same thing and from my amazing friends, and that definitely helped me make it through.

How are you doing this evening?

Pretty well!

hi isaac! i'm also a 17 year old dude and i have hEDS. my question: wanna be friends? you sound chill :D

ETA: more words

Hell yeah!

How easy/hard is it for you to do activities daily? It sounds like a lot of pain and I really wish I could understand what you go through daily.

It really depends on the day. Some days I'm able to complete activities around the house with no fatigue at all. During the school year, I tire easily, but I can stay awake in every class on good days, even with all the stairs between classes. Most of my work is on my chromebook, which I can both see easily, due to the zoom feature, and do work on without pain in my hands. Math proves challenging because I miss out on board work and I have to write out all the problems by hand, which can make my fingers and wrists pop out, but I manage to pass okay. On good days, I can go to dance (I love jazz!), even if I have to take a lot of breaks, and walk the dogs for around 20 minutes. I can usually stay up until at least midnight and still wake up on time. On bad days, I have to use crutches for anywhere I absolutely have to go, and I try not to do anything at home so I can save my energy for whatever I really need to get done. If I have to go to school that day, I get in a lot of trouble for falling asleep in class, and my pain distracts me from a lot of my work. Some teachers are more understanding than others, and don't mind the missing work because they know I'm still doing my best to read my assignments and pay attention to lectures. I usually stop by the nurse for a break or two on these days, usually during classes where my grade is best, but I try to stay at school if I can. I'm usually too tired to talk to my friends, and lunch can be hard to finish on time and keep down. I don't take notes on these days, and I skip a lot of work because it hurts to do, but I do pay as much attention as I can when I'm awake. On bad days, I go to bed as soon as I get home, even if it hurts too much to get any good sleep.

On the worst days, I don't leave my bed.

Luckily, most of my days are only slightly worse than good! I don't have many days where I have to stay home completely during the school year, because they tend to come on only after I pushed myself too far.

What would you say to people who believe EDS is a sort of 'fake illness' like chronic fatigue?

"Tell that to my COL1A1 gene, suckers." Also, chronic fatigue isn't fake.

What joints regularly pop out? Shoulder would be my first guess and do you take care of these issues yourself?

My most persistently unstable joint is probably the left side of my jaw. After that, probably my right wrist, and then my knees. My hips do pop out a lot, but they don't hurt when they do. I have two vertebrae that are permanently sideways (C1 and C2), but any other vertebrae that moves out is pretty rare and extremely painful for me. Same deal for ribs. I take care of dislocations myself, although some I just have to wait to fall back themselves because I have no clue how to move them back and the ER is expensive. I do sustain other injuries more easily, though, so I'm at the doctor for sprains a lot.

What’s something most people don’t know about you? Also, Last book you read, that you loved? I need recommends:)

Most people don't know that my hair is naturally curly. I straighten it :p Doctor Sleep is pretty fantastic! I just finished it this morning.

How do you imagine your medical outlook might have been different if you were born poor?

I feel like I can relate to the struggle of poor sick folks a lot because I didn't get proper medical care when I lived with my dad and stepmom because she was rather fond of 💫💫child neglect💫💫. However, if my mom were also poor, I might not have been diagnosed at all because we might have foregone my initial ER trips for things like dislocations and when my legs up and stopped working for a while in 2015.

I have Marfan so we’re basically cousins..

I’m 44 now and have had a spinal fusion, aortic valve/ascending aortic replacement, retinal detachment, etc.

Yes, being sick:chronically ill sucks but I don’t let it define me. I found a wonderful wife and we make each other happy. I got into computers at a young age and made a great career out of it. I work with some really awesome people and I enjoy what I do.

When I was your age I didn’t think any of that was possible. I’m here to tell you that it is - you can have a happy and productive life. Things will get better. Illnesses and health problems will come and go - and each of them will make you a bit more resilient and mentally tougher.

Good luck and take care of yourself!

Are you getting the right care for your heart? Does your version of EDS have heart issues?

My heart is doing well so far! My EDS is mostly asymptomatic in that vein!

What’s up brother man, any games you’re playing right now?

Crusader Kings II and Detroit: Become Human!

What was the process for getting diagnosed with EDS? What are some of the signs that are easily missed?

EDS diagnosis itself should be relatively simple; it's a clinical diagnosis, with basic criteria that literally any GP with an internet connection or medical textbook could fill out. However, many people spend years searching in vain for a doctor to just LISTEN. In my case, my shoulders started dislocating when I was very young, maybe three. I have a very vague memory of it. The first time, I was playing tug of war with my dad, and my shoulder popped out. I was crying, and he took me to the ER, where they put it back in. After that, it would come out over and over, and eventually my parents began to put it back until I figured out how to do it myself. No doctor questioned it. I could never keep up with the other kids growing up, and I'd become tired after even short, ten minute walks. I was very uncoordinated and couldn't play a lot of games on the playground, and writing made my hands hurt a lot as a kid. I /hated/ PE class. My muscle tone was low and I had a lot of pain and tiredness very easily. My pediatrician said it was likely due to my asthma, and considered juvenile arthritis but never looked into it. I have scoliosis and I tore my meniscus as a kid, but that was discoid, which was likely the reason for the tear. However, when I was seeing ortho at 7, they discovered I had femural anteversion, so my pelvis is shaped so that my feet naturally point inward. While looking at this, my ortho discovered that I could turn my foot 180° backwards, which he brought a bunch of students in to see. He thought it was a sign of my femural anteversion, but it was most likely hypermobility from my EDS. When I was actually diagnosed, I wasn't even searching for answers to my EDS problem. I was diagnosed by ACCIDENT while searching for an answer to my spasticity symptoms from ADOA. My neuro noticed my hypermobility, and, although it was unrelated, he referred me to a TMJ doc with a connective tissue background to check it out. That's how I was diagnosed with EDS.

I don't want to sound insensitive, did you made a bucket list? If so, can you share it with us?

The question doesn't bug me at all! I don't have any terminal conditions (although I am at a higher risk for some vascular problems), but I kinda do. I want to do something to make the world less harsh for people who are disabled or otherwise marginalized, mostly by spreading as much awareness as I can and being politically active in advocating for the rights of people who aren't able to access resources the way they should be.

Do your illnesses restrict you from doing anything? If so, what?

Sometimes. I often can't do any sort of physical activity for prolonged periods, ie over 20 minutes at a time, without risking a bad pain flare the next day. My ADOA has made me legally blind, so I can't drive and get around on public transportation, because, despite living in the city, biking or walking long distances would be too hard on my body because of my EDS.

I work with preschool kids who have multiple disabilities, usually a visual impairment combined with other physical or cognitive disabilities. It's an integrated school with typical kids, too.

How did you socialize when you were a kid? Was there anything you remember your teachers or other adults doing to encourage friendships? I feel like most of the kids with disabilities stick together instead of socializing with the typical kids but I want to know what your experience was like.

I wasn't diagnosed with ADOA or EDS until I was 14 (although they still affected me), but I did receive my autism diagnosis at 7. When I was young, many of my teachers didn't understand social delays and became very upset with me for having sensory problems or not behaving properly because I was also known to be ahead academically. I did, however, have a few teachers who were very kind to me and placed my seating near kids they'd known me to engage with. I was in a 'typical' classroom and had no aid from an intervention specialist until 8th grade (which was somewhat detrimental to my progress, to be honest. We had a lot of difficulty finding a school who understood that verbal autistic kids were even a thing), and I tended to have one or two close friends in a classroom. Kids considered me generally likeable when I was young, although I was known as the quiet, bookish kid. My meltdowns didn't stand out until middle school, so no one really judged me. The thing about disabled kids flocking together is true for me, though. In elementary school, on the playground, the kids in full time Special Education were pretty segregated. But I never really cared, I guess. I'd see a kid that was alone and go over to do whatever they were doing next to them. I ended up befriending a boy named Noah who was nonverbal and had some sort of physical disability because I went over to swing with him in kindergarten, when we were both alone. He ended up being very nice and extremely clever, and we liked to booby-trap the playground together. We were best friends until I moved in 6th grade.

How's today going?

Pretty nice! I went to the store and helped a lady get her baby to calm down :))

Why are you doing an ama?

I wanted to help spread awareness for what it's like to live with the conditions I have! Some are pretty rare, so it's important to me that I help educate people for the sake of any other people with my disabilities they cross paths with. It's really a treat to meet people who already have an understanding of what you have!

Would you go to space if given the chance?

Oof, probably not. I love learning about space, but it makes me nervous. What if my suit malfunctioned? I mean, I'm much more likely to get hit by a car or something, but that's still a reeeaaaally awful way to die. Unless they find life under the ice on Europa. You can sign me up for that immediately, I wanna study alien microbes/fish/plants/whatever could be there.

Its not very often you find fellow EDSers. Thanks for bringing this disease to light a little bit more! I was diagnosed almost 3 years ago with classic hypermobility and POTS. I dont see a doc or do anything different other than just be aware. What do you do that seems to keep symptoms at bay?

Heya, nice to see more zebras around! I brace my particularly tricky wrist a lot, usually just with ACE bandages because I haven't gotten around to getting an actual brace. It stabilizes it pretty well and helps me to do stuff I can't without it, like ride my bike. I take ibuprofen pretty much daily, but I try to alternate with tylenol sometimes so I can not screw with my organs or something. I don't take any prescription pain meds, mostly due to the fact that I can't seem to not be allergic to them. Since my skin tears easy, I try to use hydrogen peroxide to clean any scrapes just because infections are AWFUL. Aside from that, I just try to watch my limits, even if that means cancelling things I really love, like missing dance class.

What's your favorite homecooked meal?

Mashed potatoes, corn on the cob, and deer steak. I'm definitely a city kid, but my grandparents make that when I come to visit and it's literally the best thing. Bonus points for chocolate milk and candy corn after.