more About EDS and my situation
I have atypical diabetes and am battling a very serious complication of Ehlers-Danlos syndrome (EDS) which is painful and incurable genetic condition. EDS causes the weakening of collagen, your body’s ‘glue.’ I was diagnosed by a geneticist as ‘EDS -more severely affected.’ EDS causes the patient to be prone to painful joint dislocations and injuries. EDS is also a systemic condition which can cause many different complications, such as with the joints, bones and tissues, spine and c-spine, heart and circulation, digestive system, urinary system, metabolic system, and neurological problems.
EDS is a unique and unusual but very serious condition. It presents with hyper mobile joints, very soft tissues, and skin which looks and feels very soft, and is often elastic (stretchy.) EDS sufferers may not appear sick, and sometimes even look younger because of the soft skin. In spite of this, EDS is very serious. Complications of EDS are very painful and debilitating, and can sometimes be fatal. EDS info Brochure here
I am currently battling AAI (atlantoaxial instability.) AAI is a very serious EDS complication. The C1-C2 discs supporting the weight of the skull are unstable. In addition, my C3-C5 discs are also unstable. In short, the first half of my neck is unstable. This also causes a degree of brainstem and vertebral artery compression (the artery for in which blood flows from the brain to the heart.) If the vertebral artery is bent to heavily and becomes fully compressed, this may cause death.
I am often seen using bracing and neck collars on my neck for this reason. For safety, I absolutely must wear one when I sleep, drives my mobility scooter, or do anything too physically compromising.
I met with EDS specialist and Neurosurgeon Dr. Fraser Henderson, this last May. He diagnosed me and proposed cervical fusion surgery. This complication is not only painful and disabling, but gradually gets worse, often causing paralysis and/or fatality. It requires the specialized surgical fusion (which was proposed to me) to correct.(confirmation of my diagnosis and proposal for surgery can be viewed here)
As I have shared about in some of her blogs and vlogs, I have been unable to access this specialized surgery where I live. I am also unable to access proper internal medicine care, for serious and rare metabolic problems that have lead to my development of atypical diabetes. The specialized surgery I need is difficult me, and many EDS patients to access, as it is expensive and only available in a few places in the world. This is a worldwide problem which is causing many EDSers to live in severe pain and danger, battling for their lives, and sometimes losing their lives. Doctors and medical personnel are especially cruel and prejudiced when it comes to EDS patients, denying EDS exists in spite of serious affects and hard evidence, and refusing care and treatment. There have been several horror stories about this situation, which is causing many EDS patients to develop trauma. Their self esteems have sometimes been severely affected by this poor treatment (which is why I advocate for patients and for chance)..and it’s not ok! Last year, I created a petition called “Stop The Zebraphobia” (the zebra is the official mascot for EDS) and it is gaining more signatures. You can support it by signing it here.
Canada is especially bad for lack of medical care in patients with EDS. My fellow EDSer friend Sarah, who has suffered immensely also, had to sell her house to get lifesaving surgery, and yet still cannot get proper care (and has been told to go into a care home where she will be treated poorly) writes about this experience here. This is why it is also important to access internal medicine care and treatments, to stop or at least slow the disease progression of EDS and associated complications (like my metabolic problems which have led to atypical diabetes.) This kind of care is also very hard to access. I am hoping to raise enough funds to access it, too. I am already aware of the names of the doctors who are most appropriate to consult with.
I am already experiencing much of what Sarah, and many others like us, experience..and am at risk for this to get worse. As I shared on the main page, I’ve already lost my family due to what this has cost me.
Many EDS patients have had to get loans or get help from family (if this is possible, which it is not in my case) or raise funds, to afford the surgery and treatments they need to save their lives. Being in this position while also battling the illness itself is extremely stressful for EDS patients and their families.
I advocate about this issue, while I experience it myself. There are only a small handful of specialists throughout the world are trained to perform neurosurgery on EDS patients. Without a specialist performing the surgery, it is much less likely to be successful, and very dangerous to undergo. Many doctors perpetuate this situation by refusing to learn information, and become educated, about EDS. It is a serious human rights and medical ethics issue worldwide.
Dr. Henderson has performed many of these surgeries on EDS patients, with positive success. He, and other EDS specializing professionals, are frustrated by the medical communities’ lack of willingness to learn about EDS. They have made attempts to educate. My diagnosing doctor in England called the way I was being treated “disgusting.” I know of many EDS patients in my community, whom have had successful surgery with Dr. Henderson, and/or the very few other professionals like him, and been able to regain safety and quality of life!
Dr. Henderson is the man I need, to help me.
I do not have the financial resources needed to undergo the surgery with Dr. Henderson, and therefore I am living in pain and danger. I am on borrowed time, and doing all I can with the functioning I have left. I will continue to. It’s not easy. I’m a fighter, though I am gradually losing my ability to function, and have had some close calls with danger (such as seizure and stroke like episodes, and cardiac symptoms.)
I hope to raise the funds to get the surgery, as well as subsequent treatment, while giving back through my work. I continue to press on with my work in hopes of raising awareness for change, and to try and complete a second album no matter what, but I am fighting for my life. You can help me by supporting and/or sharing the message with your friends!!
Why pledge donation rather than selling?
I used to work when I could, and I would prefer to earn funds. However, I have become very physically challenged by Ehlers-Danlos syndrome, and had no choice but to go on disability pension. I work from home on my own time, as much as I’m able. My husband also has a milder health condition, as well as helping to care for the children and me, at home. So he cannot work full time, either. He is able to work part time, but it isn’t enough.
Both my husband and I are allowed to earn a certain amount per year. However, the funds I need, for the specialized lifesaving medical treatment in the USA, far exceed the earning limit. If myself or my husband were to try and ‘earn’ the funds needed, they would be deducted from our living expenses. We would have to use them to live off of. This causes a trap, in terms of us ever being able to earn the amount of money needed, to pay for my medical treatment.
However, donations are not deducted from living expenses like this. They are considered ‘gift'.’ This is why I am fundraising as opposed to selling, but offering my music, and other merch, in return. I prefers to give back and make a purposeful difference - but am put in the position of having to fundraise, to obtain the medical help I need.
More info about the hopeful goal amount and how it’d be used, on this page here