Help Needed for EDS Specialist
Donation protected
I was diagnosed with Ehler-Danlos Syndrome, Hypermobile Type 3 when I was 22. It is a genetic degenerative disease that effects mostly collagen - tendons, ligaments, etc. I have suffered from dislocations and subluxations of various joints, as well as injuries that never correctly heal my entire life. However, things have recently become exponentially worse. My pregnancy appears to have progressed the degeneration by about 20 years and my joints are now so unstable that I can barely walk most days. On top of it all, I have intense chronic pain that is a result of all the joint instability causing microtears in the surrounding muscles, tendons, and ligaments. More microtears form with each dislocation and subluxation, so the pain continues to intensify. In addition to hEDS, I have several other comorbidities that contribute to the constant suffering that I am in. I have become so severely disabled because of all this. I can't even take care of my son on my own - and that makes me feel like a horrible mother. My mother comes over during the weekdays to help. I am eternally grateful for that, but I want to be the one taking care of my son....
I am unable to file for disability at this time because up until now, no doctor has ever taken me seriously. As such, they would not file the paperwork I would need to apply. I have very recently replaced all my doctors and things seem to be looking like they will get a little better. Then again, it has become much more obvious now that I am suffering. There are now things that truly cannot be dismissed. EDS is considered one of the invisible diseases - because you cannot tell by looking at a person that they are chronically ill. So, until now, I have never been able to get the medical attention I needed. That is finally changing. My illness/disease is no longer invisible...and I have a new, growing medical team but I am missing the KEY component for managing my condition - something none of my current doctors or referrals pending can do or are qualified for. Unfortunately, all those said doctors are hesitant to treat me without this KEY component. I need an EDS specialist. Additionally, I still need to build up my case before I will become eligible for Disability - so it will be a while before I'll be able to count on that.
I need someone who is knowledgeable and will treat me accordingly so that I can hopefully get my life back and feel more like a good mother to my son. The only EDS specialist in Rhode Island is Pradeep Chopra, MD, and he is well known in the EDS field, which makes him an even MORE ideal doctor for me. However, his office requires $1000 for the initial examination which apparently takes 5-8 hours and no insurance company will agree to cover it. I guess insurance companies only cover 45 minute long appointments and anything over that the patient is responsible for. It is an out-of-pocket expense that must be paid at the start of that first, several hour-long visit. Additionally, his office does not accept my insurance. My new doctors are trying to appeal to my insurance company to cover my seeing Dr. Chopra, but so far there has not been any luck. Regardless, the $1000 would still be an out-of-pocket expense even IF my insurance company would agree to cover regular office visits.
I very much need to see an EDS specialist to get my life back. I am currently unable to work at all because of my severe disability. Even most jobs from home are outside my ability because my hands are so severely affected that I cannot type on a computer for long or much. This makes me feel extremely uncomfortable, as I have always enjoyed working and being of use. We also need me to be able to make an income to help take care of our son and more. I have recently signed on to be a Beautycounter Consultant but I have not seen much success yet, and my need to see an EDS specialist is urgent.
I have some new information to add to this post. First, I am in need of several surgeries that my insurance does not fully cover. I cannot get those surgeries until I see Dr. Chopra, but my current doctors say that I need them. It's hard to refute. However, they want Dr. Chopra to confirm them, Second, I am in need of a wheelchair.... I am looking through used wheelchairs to see how cheaply I can get one, but it's hard finding the right one for me. I need an electric one because my hands, wrists, and shoulders constantly dislocate and subluxe and I have very little control over them now. Finally, I am also in need of specialized braces to help hold my joints in place and help them recover post-surgery. My insurance does not cover these kinds of braces and I need some of them custom-made.
I have increased the requested amount to $3000 to cover the additional costs. My actual total might even be higher than that, depending on how many of the surgeries can I get done in how much time. Additionally, the likelihood of my insurance agreeing to cover office visits with Dr. Chopra is quite low (I have spoken to his office personnel and they DO NOT take my insurance). Additionally, EDS has several exceedingly common comorbidities, as I mentioned earlier. There are other specialists that I need to see as well. In all likelihood, I will have to see a doctor in Boston at least once, and I have no idea how much that would cost.
I need this help to get my life back and to be a good mother to my son, Kaiden. I do not often have the ability to even hold him much, like I am in the picture. I used to be a highly active individual. My favorite things are kayaking, hiking, drawing, reading, spending time at the beach, stargazing, fencing, etc. I can do very few of those things now. Please, I need help to be able to be, well, ME again.
Sincerely,
Amanda
I am unable to file for disability at this time because up until now, no doctor has ever taken me seriously. As such, they would not file the paperwork I would need to apply. I have very recently replaced all my doctors and things seem to be looking like they will get a little better. Then again, it has become much more obvious now that I am suffering. There are now things that truly cannot be dismissed. EDS is considered one of the invisible diseases - because you cannot tell by looking at a person that they are chronically ill. So, until now, I have never been able to get the medical attention I needed. That is finally changing. My illness/disease is no longer invisible...and I have a new, growing medical team but I am missing the KEY component for managing my condition - something none of my current doctors or referrals pending can do or are qualified for. Unfortunately, all those said doctors are hesitant to treat me without this KEY component. I need an EDS specialist. Additionally, I still need to build up my case before I will become eligible for Disability - so it will be a while before I'll be able to count on that.
I need someone who is knowledgeable and will treat me accordingly so that I can hopefully get my life back and feel more like a good mother to my son. The only EDS specialist in Rhode Island is Pradeep Chopra, MD, and he is well known in the EDS field, which makes him an even MORE ideal doctor for me. However, his office requires $1000 for the initial examination which apparently takes 5-8 hours and no insurance company will agree to cover it. I guess insurance companies only cover 45 minute long appointments and anything over that the patient is responsible for. It is an out-of-pocket expense that must be paid at the start of that first, several hour-long visit. Additionally, his office does not accept my insurance. My new doctors are trying to appeal to my insurance company to cover my seeing Dr. Chopra, but so far there has not been any luck. Regardless, the $1000 would still be an out-of-pocket expense even IF my insurance company would agree to cover regular office visits.
I very much need to see an EDS specialist to get my life back. I am currently unable to work at all because of my severe disability. Even most jobs from home are outside my ability because my hands are so severely affected that I cannot type on a computer for long or much. This makes me feel extremely uncomfortable, as I have always enjoyed working and being of use. We also need me to be able to make an income to help take care of our son and more. I have recently signed on to be a Beautycounter Consultant but I have not seen much success yet, and my need to see an EDS specialist is urgent.
I have some new information to add to this post. First, I am in need of several surgeries that my insurance does not fully cover. I cannot get those surgeries until I see Dr. Chopra, but my current doctors say that I need them. It's hard to refute. However, they want Dr. Chopra to confirm them, Second, I am in need of a wheelchair.... I am looking through used wheelchairs to see how cheaply I can get one, but it's hard finding the right one for me. I need an electric one because my hands, wrists, and shoulders constantly dislocate and subluxe and I have very little control over them now. Finally, I am also in need of specialized braces to help hold my joints in place and help them recover post-surgery. My insurance does not cover these kinds of braces and I need some of them custom-made.
I have increased the requested amount to $3000 to cover the additional costs. My actual total might even be higher than that, depending on how many of the surgeries can I get done in how much time. Additionally, the likelihood of my insurance agreeing to cover office visits with Dr. Chopra is quite low (I have spoken to his office personnel and they DO NOT take my insurance). Additionally, EDS has several exceedingly common comorbidities, as I mentioned earlier. There are other specialists that I need to see as well. In all likelihood, I will have to see a doctor in Boston at least once, and I have no idea how much that would cost.
I need this help to get my life back and to be a good mother to my son, Kaiden. I do not often have the ability to even hold him much, like I am in the picture. I used to be a highly active individual. My favorite things are kayaking, hiking, drawing, reading, spending time at the beach, stargazing, fencing, etc. I can do very few of those things now. Please, I need help to be able to be, well, ME again.
Sincerely,
Amanda
Organizer
Amanda Myers
Organizer
Coventry, RI
