Hello. I am a passionate 32 year old mom, music artist, writer, independent producer and advocate with so much to live for, but I'm struggling with my health. My work has helped many people. But now I'm the one who needs help. My goal to get the medical help I need is 10,000 ideally, but I would even be very grateful to reach half of that. This fundraiser is anonymous, but if you are interested in helping me I can provide all kinds of pictures, proof, diagnostic reports citing my needs, to show that I am a human being in need of help, and that my need is genuine. I can offer a download of my music album as a gift of gratuity, also.
I have a serious and unusual genetic condition called Ehlers-Danlos syndrome, or "EDS." What is EDS? EDS is caused by a weakening of collagen (your body's 'glue') Since collagen is everywhere, this affects the body systemically, meaning it can cause many serious affects.
I have been very sick, challenged and in pain with EDS, for the past few years especially. I work from home, often from bed. I am only able to get out of the house occasionally on 'very good days' and I savour it when I can. I was born with this condition, but never knew, because I went undiagnosed for way too long.
EDS is a condition that not enough people are aware of, even though it causes very serious, painful and debilitating complications involving many body systems such as the bones, joints and tissues (especially the spine), digestive system, circulatory system, heart, autonomic nervous system, immune system, and kidneys. Only this year, there has finally been some awareness for EDS, but we have a very long way to go still.
Because of the unusual nature of EDS, many doctors do not want to learn about how to provide treatments, in spite of the fact that many of the complications are treatable (though they can be expensive and time consuming to treat.) They are almost phobic of EDS. The mascot for EDS is the "Zebra", which is meant to symbolize an unusual medical illness.
It feels like how many doctors treat us could be called "Zebra-phobia" - because they discriminate against treating us as soon as they know we have EDS. This is discrimination, almost similar to racism or homophobia. It hurts a lot to be discriminated against like this. It is scary, to be so sick with things like difficult eating (due to breaking down digestive system), possible heart attack, stroke, or seizure from untreated nervous system or circulatory disease, developing kidney disease, metabolic diseases etc.
In addition to this, when EDS patients try to diplomatically and politely advocate for themselves, and educate the doctors as to how this disease affects us, we are only treated more poorly, and turned down for services and help. This has happened to me. EDS patients are suffering, and often shunned. It feels cruel.
There are a few doctors who do diagnose and treat EDS complications successfully. They are able to advocate by writing reports proving and confirming the complications and what is needed for ongoing care, so that the primary care doctor of the patient cannot deny the complications' and provide ongoing treatment where necessary. But many people, including me, are unable to afford to see these doctors.
Because people with EDS have multiple complications, in order to have an ideal treatment plan, we need to consult with many different specialists such as GI doctors, cardiologists, neurosurgeons, neurologists, urologists, metabolic/endocrinology doctors, for example, depending on the EDS patients' problems and needs.
The few EDS patients who are receiving the right care usually have a 'team.' In addition to this, EDS needs can be very stressful and taxing for patients and their families ie. special bracing for unstable joints, ring finger splints in order to be able to use the hands, special diet foods, mobility equipment, supplements etc..
Because of not having even close to any kind of 'team' to help me manage my EDS and make proper treatment plans, I am suffering. My family and friends are watching me suffer. I am on toxic drugs which can cause me nausea and only superficially stifle some of my symptoms, but while making them worse, and not totally helping overall. My two worst problems are my C spine and my digestive system, which has been slowly breaking down over the past couple of years. I may have some metabolic disorder developing also, and it'd be good to see a doctor who is aware of how the EDS body behaves under crisis, for that. I'm now totally unable to see a gastroenterologist, in spite of relying on Creon (pancreatic enzymes) ursodiol and fibrezyme to digest any food. This should raise concern, but instead, I'm being ignored.
After getting very sick and going down to 85 ibs in 2016 I was hospitalized for a week due to weakness and dehydration. When i was in the hospital, a GI doctor came to speak with me, but only spent six minutes with me. He would not let me talk, did not listen, and walked away abruptly. It was shocking treatment because I was clearly so ill, there was no way I could be 'faking' anything. My family and friends were alarmed at how I looked at that time. My face was skeletal, and my colour was a yellowish grey pale tone. I felt very weak and unable to focus. It was awful, and traumatic.
I worked very hard on my own to stabilize that crisis time. I used many things (which were costly and a lot of work) like high doses of probiotics, herbs, special gentle diet, Creon (prescription bancreas enzymes) ursodiol (prescription bile for liver) and cromolyn sodium (prescription mast cell/immune system stabilizer) to stabilize my digestive system situation enough to absorb my nutrients better, and gain weight. I was successful at this, with the help of my internal medicine doctor, who doesn't know much about EDS and is a busy man, but the only one concerned enough to try and support me. He was able to provide the prescriptions after I explained to him what I thought could be going on.
However, he is only a generalist and cannot do it all. A second opinion referral was put in to the office of GI doctors in my city, but, I am being repeatedly turned down for a consult. I have been turned down twice. Once after waiting over a year, only to receive a letter saying they will not see me.
My digestive systems' function is now starting to relapse, in spite of all that I am doing. I don't know what to do anymore. I need to see a GI doctor, but I feel as though I have been blacklisted. The only way I am going to be able to see a GI doctor at this point is through a private consult in the USA. But I cannot afford to add this on. I will be going to the USA to see an EDS specializing neurosurgeon about my spine (because there are areas of my spine which may be becoming unstable) in May.
However, I only just have enough funds to cover this. Ideally, I would love to see an EDS-aware GI doctor while there, for a private consult and hopefully, an MRI scan of my abdomen, to see if there is any abnormalities with my digestive organs. This is for my safety, and being denied of this here at home where I live is compromising my safety. If there are problems lurking there, they should be treated now, not left until severe and/or possibly too late.
Due to the discrimination against patients suffering with EDS, and doctors being unwilling to accept and/or treat EDS complications (which is unethical) quality of life for many EDS patients is very poor. I am affected by this. Many people with EDS, who cannot afford to see these few specialists, are slowly dying from either untreated complications, or suicide due to depression caused by feeling rejected and discriminated against, while in pain, suffering with untreated medical needs. It is appalling.
My situation is grim because although I am a passionate advocate and music artist/independent producer online, and have done good work which has helped people, it's been a struggle to earn money for myself, to support my worsening condition. It feels so devastating to me. People see me on instagram promoting my music, or read my works. They say "wow, you look so pretty! I really enjoyed your catchy music, your writing/advocacy was really helpful to me because I related." I want to do so much more with all this too, but part of me goes "if you only knew - I am dying."
I am being mostly barred from obtaining help here in the area I live (for reasons I explained.) I am only able to work from home because I have multiple disabilities and ailments due to this condition. It doesn't need to be this way, but the medical system is seriously behind in the area that I live in, and not wanting to learn or admit to this, so instead they are behaving abusively. Their 'solution' is to simply reject EDS patients. Including me. Most (almost all) doctors here are choosing to do this instead of try to help.
My only hope is to get some consults, especially with the neurosurgeon, a GI doctor, and ideally a few others if possible, have a care plan written, and have it notarized by a medical lawyer. I have been able to reach as far as seeing the EDS neurosurgeon, and he may recommend who else to see, but I likely cannot go any further unless I can raise/earn the funds to do so. If I cannot do this somehow, I am likely going to be terminally ill in this situation.
Please consider helping if you have the means. I work as hard as I am able from home, trying to earn extra moneys (in addition to the small disability pension my kids and I have to live off of.) Given my energy and physical limits and pain I can only do so much. If you have the means to help me, I promise I am worth it. I try to give back in any way I can. I love life and want to live it to the fullest, and express my passions as much as I can.