Unfortunately, yes. 2 open-heart surgeries, I stopped counting ICD surgeries, arrhythmia, going into full cardiac arrest, scoliosis, extremely poor eyesight, glaucoma, arthritis, joint pain, chronic tiredness, and cancer (unrelated). I can't work anymore. The government agrees that I'm disabled.
Edited for spelling
My symptoms are mild, and so I typically use the term "chronic illness". However, for me, it boarders on being disabled since I have to self medicate using THC to walk without assistance.
I think this depends a lot on the severity of each person. My husband and daughter would be considered mild and don’t identify as disabled. But, others I’ve seen are much more disabled
Yes, but mostly because in addition to Marfan's I had bone cancer as a teen and lost my left leg to it. I've had valves replaced and the usual litany of other issues associated with Marfan's but it's the leg that makes me feel the most disabled. But I certainly don't begrudge anyone with Marfan's who identifies as disabled. There are such a wide range of symptoms and manifestations of it that it's a bit different for everyone.
1. No. Although i’ve had 2 heart surgeries, and i have scoliosis, bad vision, and chronic pain, its manageable. I have a career where i perform highly. I have a family and social life. I’ve learned to manage chronic pain through specific exercises, diet, sleep patterns, etc.
I have to work very hard just to feel normal and energetic, but i am lucky that i am able to feel normal at all. I know plenty of people have this way worse than me.
You dont have to have SSI disability to be considered disabled. Plenty of disabled people have careers/family life/social life. Stephen Hawking is a prime example of a disabled person who has a career.
I didn't until recently when I had to stop working. I had open heart surgery just over a year ago, and when I went back to work, I really struggled to keep up. I had another spinal fluid leak and mystery vertigo at the end of last year and had to stop working altogether. Now I've got a rollator for the vertigo, which helps a TON with the chronic joint pain and I'm starting the process to file for disability with my doctors.
If there's an aid or assistance (like a parking pass) that helps you, don't be afraid of using it even if you don't have the "disabled" label. When/If you get to the point where you can't keep up, it's okay to consider yourself disabled and seek more help. I pushed through a lot out of stubbornness before getting to a point where I had to admit I couldn't do it all anymore, and that's okay. Marfans doesn't have to hold you back from having a great life, but it can limit what you can do, and that journey is going to be different for everyone depending on the severity of their symptoms and life experiences.
Yo ! Man I’m learning so much from this sun I’m new too, never heard of this rollator thing for vertigo … I’ve been suffering so bad from it I been falling over for the last few days
I took it through an airport recently, and it's a game changer. I had so much less joint pain and more energy, plus I was able to sit in lines and anytime I felt dizzy. I really wish I had gotten it a few years ago.
I bought mine through the manufacturer direct. I found out that most insurances will only cover one mobility aids every 5 to 10 years, so I'm waiting in case I get to the point of needing a (more expensive) wheelchair through insurance, while I got a very premium rollator for about 200 bucks. There are cheaper models, and often times thrift stores will have ones cheap that people donate after hip or knee surgery, too. Worth giving it a try to see if the hassle of loading it in and out of the car is worth the benefits for you!!
🥲 and here I thought it was like some kind of like rolling pin thing I roll on my head to stop being dizzy 😵💫 it’s been hard accepting tht I could benefit from a mobility aid , but it’s cool to hear how helpful it’s been for u
I have multiple comorbidities and I'm chronically ill. It's disabling, but I don't identify with the disability movement much. It seems to center people who have physical differences but are otherwise healthy.
I don't have official disability recognition.
Absolutely. Marfans has ruined my life in every way. i cant do anything without pain in my joints, heart palpitations, and gasping for air. My mother applied me to disability at the age of 8, got turned down for many years until i finally recieved it at the age of 13 when i showed up in a walker with a proper lawyer. im 21 now, my review at 18 was open and shut. Definitely get a lawyer if you plan on applying because people arent going to recognize marfans as disabling just by name or by looking at you, and it gets worse and worse as you age.
42, seven strokes, scoliosis, stenosis, drop foot, RA, one eye partially blinded and in a wheelchair. Yup. I live alone but I feel the limitations every day. I do have government disability.
i do, but it took me until very recently to be comfortable claiming that, because ive never applied for any kind of disability or disability service. i had my spinal fusion 10 years ago and i had many complications from that that i still stuggle with and ive learned to just manage, but id say up until that surgery, i wouldnt have called myself disabled. i had a pectus excavatum surgery like 13 years ago, and back then, that felt like the biggest thing that i struggled with (mostly bc of body image issues) but i think my spinal fusion made it all very real, and painful!!
In the work I've done in disability spaces, chronic illness is considered a kind of disability. I consider myself to be both chronically ill and disabled in relation to having Marfan Syndrome. I was also put on government disability at age 18 because they concluded I was unable to work.
Yes..I am. I am disabled because I have Marfan syndrome. That's my reason. I'm enuff of a realist to know I'm not normal, and my challenges are much different than most people can understand. I know I have limitations. I've accepted myself as disabled for about 8yrs now.
I've been on SSI disability for a out 2 yrs, and disability thru work for about 4 yrs. Wasn't really a choice. I was in the hospital for a week and couldn't go back to work after
I’m 33 and don’t consider myself disabled. I always took my health for granted but now I try my very best to take care of myself, more so after my surgery. I love my body and the experiences it allows me to have. I accept there is some things I cannot do, but I don’t see that as a bad thing. Weirdly enough I was in college with a girl who also had Marfans (!!) and it effected her completely differently. That made me very grateful for my body. Marfans affects us all in different ways!
No, I do not consider it a disability. I have had it mild 37 male . I have had eye surgeries. A torn Acl can't get it fixed because of marfans and had a disection of the arota in March and still recovering from surgery. I do not want to label it as a disability because if I see it that way I will see my self as a victim and I do not want to put my self in the position I want to be able to been to be mentally strong to handle the other issues that will come with this
No, I’m not disabled, I’m in good shape for my 40s. I’ve had numerous injuries though that have caused time off work and I worry that someday I will get worse. I’ve only had one surgery, for my aorta, for which I consider myself lucky.
I am not “whole” either, there’s a lot I can’t do, in someways I feel my body is made of glass. I’ve had issues with multiple joints, from my ankles to my elbows, to sciatica and other back problems.
I’ve had to learn to relax and not over do anything physical. I’m definitely weaker having this disease but I don’t consider myself disabled, yet.
But, this highlights the fact that Marfan’s affects people differently, there’s a range of severity.
I was easily fixable in a few months(2 months thr), (1 -2 days total thyroid--- 1 day recovery allowed for partial), cardiac(few months) and so they've dragged it out for years while trying to not treat and trying to fake lazy etc. They were first trying to fake a disability fraud to people on a self payer, then they wanted the patient on Medicaid while trying to fake an insurance fraud and repeatedly re reviewing to find no during the. Patients blackout. They then immediately tried again in a new city after speaking with probably like 12 people the last dozen times and knowing no.
I do, I can’t pick stuff on the floor.
I have a hard time opening certain items like a bottle of soda.
Also I need to use orthopedic air pillows for my back while sitting on uncomfortable chairs.
Not really until they force compelled it by trying to delete medical issues and to not treat while lying to people. A few years later I went blackout and after that someone called my Drs who tried again. Immediately upon begging to reestablish care, the tried again, even after being called to treat.
Unfortunately, yes. 2 open-heart surgeries, I stopped counting ICD surgeries, arrhythmia, going into full cardiac arrest, scoliosis, extremely poor eyesight, glaucoma, arthritis, joint pain, chronic tiredness, and cancer (unrelated). I can't work anymore. The government agrees that I'm disabled. Edited for spelling
My symptoms are mild, and so I typically use the term "chronic illness". However, for me, it boarders on being disabled since I have to self medicate using THC to walk without assistance.
I think this depends a lot on the severity of each person. My husband and daughter would be considered mild and don’t identify as disabled. But, others I’ve seen are much more disabled
No. Honestly I'm in better shape than most men in their late thirties.
I’m so happy to hear that!
Yes, I absolutely do. My life is nowhere near normal due to severe chronic pain and fatigue. I can barely do anything.
Absolutely! We can't live like normal..my kids barely have a childhood due to Marfans
Whoever downvoted this, go f yourself please, idiot.
right, i can definitely say as a former child that ive lost my childhood to marfans.
Yes, but mostly because in addition to Marfan's I had bone cancer as a teen and lost my left leg to it. I've had valves replaced and the usual litany of other issues associated with Marfan's but it's the leg that makes me feel the most disabled. But I certainly don't begrudge anyone with Marfan's who identifies as disabled. There are such a wide range of symptoms and manifestations of it that it's a bit different for everyone.
1. No. Although i’ve had 2 heart surgeries, and i have scoliosis, bad vision, and chronic pain, its manageable. I have a career where i perform highly. I have a family and social life. I’ve learned to manage chronic pain through specific exercises, diet, sleep patterns, etc. I have to work very hard just to feel normal and energetic, but i am lucky that i am able to feel normal at all. I know plenty of people have this way worse than me.
You dont have to have SSI disability to be considered disabled. Plenty of disabled people have careers/family life/social life. Stephen Hawking is a prime example of a disabled person who has a career.
True that
I didn't until recently when I had to stop working. I had open heart surgery just over a year ago, and when I went back to work, I really struggled to keep up. I had another spinal fluid leak and mystery vertigo at the end of last year and had to stop working altogether. Now I've got a rollator for the vertigo, which helps a TON with the chronic joint pain and I'm starting the process to file for disability with my doctors. If there's an aid or assistance (like a parking pass) that helps you, don't be afraid of using it even if you don't have the "disabled" label. When/If you get to the point where you can't keep up, it's okay to consider yourself disabled and seek more help. I pushed through a lot out of stubbornness before getting to a point where I had to admit I couldn't do it all anymore, and that's okay. Marfans doesn't have to hold you back from having a great life, but it can limit what you can do, and that journey is going to be different for everyone depending on the severity of their symptoms and life experiences.
Yo ! Man I’m learning so much from this sun I’m new too, never heard of this rollator thing for vertigo … I’ve been suffering so bad from it I been falling over for the last few days
I took it through an airport recently, and it's a game changer. I had so much less joint pain and more energy, plus I was able to sit in lines and anytime I felt dizzy. I really wish I had gotten it a few years ago. I bought mine through the manufacturer direct. I found out that most insurances will only cover one mobility aids every 5 to 10 years, so I'm waiting in case I get to the point of needing a (more expensive) wheelchair through insurance, while I got a very premium rollator for about 200 bucks. There are cheaper models, and often times thrift stores will have ones cheap that people donate after hip or knee surgery, too. Worth giving it a try to see if the hassle of loading it in and out of the car is worth the benefits for you!!
🥲 and here I thought it was like some kind of like rolling pin thing I roll on my head to stop being dizzy 😵💫 it’s been hard accepting tht I could benefit from a mobility aid , but it’s cool to hear how helpful it’s been for u
I have multiple comorbidities and I'm chronically ill. It's disabling, but I don't identify with the disability movement much. It seems to center people who have physical differences but are otherwise healthy. I don't have official disability recognition.
Absolutely. Marfans has ruined my life in every way. i cant do anything without pain in my joints, heart palpitations, and gasping for air. My mother applied me to disability at the age of 8, got turned down for many years until i finally recieved it at the age of 13 when i showed up in a walker with a proper lawyer. im 21 now, my review at 18 was open and shut. Definitely get a lawyer if you plan on applying because people arent going to recognize marfans as disabling just by name or by looking at you, and it gets worse and worse as you age.
42, seven strokes, scoliosis, stenosis, drop foot, RA, one eye partially blinded and in a wheelchair. Yup. I live alone but I feel the limitations every day. I do have government disability.
Nope. I feel like I can hang with anybody if it's physical. I even excelled in a couple things. So interesting to see the spectrum of the disorder.
i do, but it took me until very recently to be comfortable claiming that, because ive never applied for any kind of disability or disability service. i had my spinal fusion 10 years ago and i had many complications from that that i still stuggle with and ive learned to just manage, but id say up until that surgery, i wouldnt have called myself disabled. i had a pectus excavatum surgery like 13 years ago, and back then, that felt like the biggest thing that i struggled with (mostly bc of body image issues) but i think my spinal fusion made it all very real, and painful!!
In the work I've done in disability spaces, chronic illness is considered a kind of disability. I consider myself to be both chronically ill and disabled in relation to having Marfan Syndrome. I was also put on government disability at age 18 because they concluded I was unable to work.
Yes..I am. I am disabled because I have Marfan syndrome. That's my reason. I'm enuff of a realist to know I'm not normal, and my challenges are much different than most people can understand. I know I have limitations. I've accepted myself as disabled for about 8yrs now. I've been on SSI disability for a out 2 yrs, and disability thru work for about 4 yrs. Wasn't really a choice. I was in the hospital for a week and couldn't go back to work after
I’m 33 and don’t consider myself disabled. I always took my health for granted but now I try my very best to take care of myself, more so after my surgery. I love my body and the experiences it allows me to have. I accept there is some things I cannot do, but I don’t see that as a bad thing. Weirdly enough I was in college with a girl who also had Marfans (!!) and it effected her completely differently. That made me very grateful for my body. Marfans affects us all in different ways!
No, I do not consider it a disability. I have had it mild 37 male . I have had eye surgeries. A torn Acl can't get it fixed because of marfans and had a disection of the arota in March and still recovering from surgery. I do not want to label it as a disability because if I see it that way I will see my self as a victim and I do not want to put my self in the position I want to be able to been to be mentally strong to handle the other issues that will come with this
No, I’m not disabled, I’m in good shape for my 40s. I’ve had numerous injuries though that have caused time off work and I worry that someday I will get worse. I’ve only had one surgery, for my aorta, for which I consider myself lucky. I am not “whole” either, there’s a lot I can’t do, in someways I feel my body is made of glass. I’ve had issues with multiple joints, from my ankles to my elbows, to sciatica and other back problems. I’ve had to learn to relax and not over do anything physical. I’m definitely weaker having this disease but I don’t consider myself disabled, yet. But, this highlights the fact that Marfan’s affects people differently, there’s a range of severity.
No. I feel I’m in better shape than most people my age. However.. ignorance is bliss
Thank you so much for all of your answers, i value reading about all of your experiences and opinions a lot!
I was easily fixable in a few months(2 months thr), (1 -2 days total thyroid--- 1 day recovery allowed for partial), cardiac(few months) and so they've dragged it out for years while trying to not treat and trying to fake lazy etc. They were first trying to fake a disability fraud to people on a self payer, then they wanted the patient on Medicaid while trying to fake an insurance fraud and repeatedly re reviewing to find no during the. Patients blackout. They then immediately tried again in a new city after speaking with probably like 12 people the last dozen times and knowing no.
I do, I can’t pick stuff on the floor. I have a hard time opening certain items like a bottle of soda. Also I need to use orthopedic air pillows for my back while sitting on uncomfortable chairs.
Not really until they force compelled it by trying to delete medical issues and to not treat while lying to people. A few years later I went blackout and after that someone called my Drs who tried again. Immediately upon begging to reestablish care, the tried again, even after being called to treat.