Previous thread >>37327390I wanted to respond to some questions that didnt get answered. For anyone new. Ehlers Danlos syndrome is a condition that affects collagen production. Its linked to autism and being trans, and affects women more than men. It causes chronic pain, frequent dislocations, and a variety of health issues.>Im 26, am I too old for ABLE?No. If you got the disabling condition at 25, apply anyway. It is based on the age which you become disabled, not your current age.>how do I know if I qualify for SSDI? Work credits. Work credits determine everything related to Social Security benefits. Go to the SSA.gov website and see if you have worked enough to draw benefits at your age.>how do you find friends to help you manage daily life?Some of my friends I got before I was disabled. Some Ive made afterward. I had a very apparent deterioration in my health at the beginning of this year, and had a lot of trouble just getting out of bed. Most people will be kind to someone going through that.The way I maintain those relationships is by trying to be as helpful as I can. I make sweets for people or cook meals. One person I helped relocate and find work and a place to live. I try to help people manage appointments, give them nudges in the right direction, and generally be a positive influence in their life. Being young and conventionally attractive also helps>how do you get diagnosedIts very tough. Start by checking out the ehlers danlos society hEDS criteria, and seeing if you meet them. If you feel you do, you need to look for a decent healthcare provider.I used Amazon ONE medical. My friend works there and was able to give me a free membership and the people there treated me well. I got a temp disability placard for my car and some pain meds. And then they referred me to a provider in Portland who has seen a lot of hEDS and HSD patients.Most providers arent experienced with hypermobility or connective tissue disorders.
>>37336781I think the trip you were asking about in the previous OP is Robin, the British one
>>37336907Yes thats who Im thinking of. What happened to her? Is she doing alright?
>>37336781i do all those lol
Oh. Huh, I've never seen this before on here. I have classical subtype EDS. Getting to the point of dx was a bitch I tell you what, as was learning to cope with how disabled I'd been by that + lupus + injuries from abuse. But my life is way better now and I am very ok with my body's level of functioning.
And if anyone has ABLE account questions I can likely answer them or at least point you towards a resource.Also leaving this here:https://howtogeton.wordpress.com/https://www.goodreads.com/book/show/58288898-nolo-s-guide-to-social-security-disabilityWould strongly rec this site and the most recent edition of the Nolo Press book you can find at the library if applying for SSI or SSDI.
Very interesting seeing this thread. I was just researaching links between autism, EDS, transgenderism, and paranormal / high strangeness experiences.I'm like 80% certain I've got CCI or POTS but the only doctor in my state that diagnoses it is out of network and charges almost 2k for a consultation. Life as a diseased repper, I guess.
>>37336781Oh. Is this why I can do like picrel... Also I can do the leg ones and the hands behind the back one.
>>37337341I have some similar issues. Love to talk about it with you.
>>37338322>>37337341I was mistreated by doctors for several years.I started working an intense factory job a bit before my 19th birthday. Pretty quickly the grinding pain in my left hip worsened. I was having issues with my back and had a hard time sleeping. When I spoke to my doctor he told me to take asprin and that I should just work a different job.Well, eventually it got too much for me to stand at that job. I started slowing down. I couldnt lift the bins of metal chips into the centrifuge. I got fired, and then just dealt with chronic pain for another 2 years while being out of work. I started avoiding physical activity. And then things got worse. Eventually I really overdid it and ended up bedridden for the better part of a month. I had to start using a cane to get around. Getting out of chairs was difficult. I had a hard time going to the grocery store on my own.And my doctors treated me horribly. I was given a drug abuse panel instead of imaging when I went to the ER in pain. I was told to "just take care of myself" by the patient care advocate. At one point my doctor told me to eat potato chips for my feinting issues. I felt totally hopeless.Eventually I buckled down and travelled a few hundred miles to see other doctors. And they were really good to me. But it shouldnt have taken 2 1/2 years of me getting worse to get there. And my doctors at home should have taken me seriously.If I knew not to do heavy lifting or that factory work would do actual harm to my body, I would be in a totally different spot right now. I would probably have a much easier time walking unassisted. And I wouldnt be in as much pain.
i have it desu
>>37336781>and affects women more than menok wtf does this mean in this context? I hate statements like these, like is it linked to fucking hormones? xx/xy chromosomes? adverse life experiences? WHAT mutherfucker? does women also mean trans women in this context or...?unrelated but did you know that doctors were especially drawn to the nazi party in wwii germany?seriously I hate you fucking people and your god damn stereotyping
>>37336781>Most people will be kind to someone going through that.lol no
