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Kaitlyn's Ehlers-Danlos Health Fund

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My name is Kaitlyn.
I'm 29 years old, I've been married for two years, and I live in beautiful Australia with my husband Eli and our two dogs. We have so much to be thankful for, but an enormous burden has been placed on us both which has left us struggling.
In May I was diagnosed with a rare, incurable, genetic disease called Ehlers-Danlos Syndrome. I have type 3 (hypermobility) and type 4 (vascular).

Most of my life I've been "sick" and nobody could give me any satisfactory answers as to why. It started with episodic internal bleeding when I was a kid and continued frequently until I was getting a few blood transfusions per year and was being hospitalized routinely. You can't imagine the frustration that occurs when you sit in the hospital for two weeks and see yet another specialist who puts you through all the same invasive tests you've had a million times before and then comes back to you with no answers. The doctors never knew why I bled, seemingly with no warning, into my own body. The only thing any doctors ever said was that my vascular system was just deformed in certain places in my body and that it must somehow cause certain places to bleed easily. To say my family and I were frustrated is the understatement of the year. I eventually wanted to just stop going to the hospital and would hold off while bleeding for days, hoping that the weakness would go away and I wouldn't need to go in because I knew exactly how it would go. My family took me to every specialist they could come up with in every city we were told to go to. I was anaemic and weak a lot and often tried to hide how little energy I had. If you've ever been anaemic, I don't have to tell you how shitty it makes you feel. I was chronically anaemic.
A few years ago things got worse…
I had just come to Australia to continue my schooling and do some travelling and very shortly afterward I started experiencing weird, seemingly all different, ailments. The bleeding increased in severity and frequency out of nowhere.
Things deteriorated very quickly for me and I started getting bouts of vertigo, headaches, and severe pain that would start with swollen fingers in the morning and would travel throughout my body. I suddenly couldn't feel the muscles in my bladder anymore so I wasn't able to properly relieve myself or tell when I had to urinate. My liver and kidneys started acting strangely on test results. I started bruising severely all over my body and losing significant amounts of weight for no particular reason. Sometimes the task of just moving my arms, let alone actually getting out of bed, was suddenly an enormous struggle. I was having a great deal of difficulty walking or just standing upright. The pain in my joints and muscles was at times unbearable and I was well past the point of exhaustion, both physically and emotionally.
One of the problems with having what's known as an "invisible illness" is that people think you're fine. It's not like missing a limb, for example, and therefore everyone knows very clearly what your limitations are and have a pretty good idea about how to treat you without any explanation. With an "invisible illness" to everyone else, you're fine and if you're unable to do something, not only do you have to explain but often you're met with skepticism followed with suggestions on miracle diets, and opinions on what's not a "real" illness. Increasingly, and as the list of strange symptoms lengthened, I felt people getting frustrated, bored, and "over" me. The problem was that when all this was first happening, it seemed like the symptoms were all separate problems, and lead some people, horrifyingly even medical professionals, to brand me as a hypochondriac, a drug-seeker, and an attention-seeker. More than once I've had actual nurses treat me like absolute garbage while in awful pain and feeling terrified. I couldn't believe how I was treated at times. Basically, it really sucked. It was an awful several years from the time I started getting sicker to the time I was properly diagnosed. I lost many friends and closed myself off from a lot of people whom I felt would never understand. Some days I couldn't physically get out of bed or up the stairs and I'm ashamed to say that for a couple of years I thought of suicide every day. If it wasn't for the support of my now husband, Eli, there's no doubt in my mind that I wouldn't be here today.
The pain and mobility in my joints and the pain in my head are often severe and debilitating, but the times where I can go about my life normally are all that much more precious to me when they happen and in a way it forces me to always make them count because I know these are the days that I will see fewer and fewer of as time goes on and my disease progresses.

In May of this year I finally saw a new specialist who just happened to have another patient with my disease and recognized a few obscure details from my distant past as symptoms. He was able to link everything together as being caused by one single ailment, which surprised me a lot, as I put to rest the idea of ever having a proper diagnosis for my internal bleeding issues. Tests confirmed I had something called Ehlers-Danlos Syndrome and I felt both relieved and terrified at the description as well as the words "incurable" and "degenerative". The life stories of others with EDS, as well as the symptoms for the two types I had, were shocking in that they all described me down to the last detail and sounded like it could have been all written by me. Even the fact that I had been showing off how double-jointed I am since I was a young kid. My skin on my face is translucent and you can see big blue veins between and under my eyes. My joints in my jaw and other places on my body had been arthritic for many years and deteriorated and dislocated easily and seemingly for no reason. I had intense leg pain my whole childhood and right into my teens which were always attributed to "growing pains" despite being prolonged, severe, and being accompanied by intense bruising that developed out of nowhere. This was truly me and I knew it before the tests even came back as positive. The treatment is palliative. I will lose my mobility, and I will continue to be in severe and debilitating pain for the rest of my life. The goals now are to stay out of a wheelchair for as long as possible and to try to live my life as fully as I can. The extreme pain I feel on a daily basis makes just living my life difficult and makes socializing feel impossible most of the time.

I'm hopeful that some new treatments will help me regain a better quality of life and a possible (very expensive) experimental surgery might help me live with less pain. I want so badly to help take some of financial burden from my wonderful husband who works so, so hard to support us both and pay all my medical bills in addition to our household expenses.

This fund will go toward helping my quality of life:


- $40,000 is the cost of the experimental procedure which puts a device in my back and cuts off the pain signals to my brain. My specialist wants to book this ASAP in order to get me into physical therapy and in order to quickly help raise my quality of living.
- $5,500 is the approximate cost of our medical bills and debts that have been taken out to pay for doctors visits, lost wages, insurance, as well as many other alternative therapies costs.
- Any other funds made will go toward helping me set up my art studio so that when I'm well enough to help contribute toward household earnings, I can continue painting and selling my art online.


As things get more difficult, I can only hope that I'll continue to try and live my life as fully and as happily as possible and I hope that I can count on your love and support going forward.

Thank you for everyone who has gone through part or all of this hell with me. Thank you to my family who believed me and who showed me acceptance. Thank you to those of you who've spent many days and nights keeping me company in the hospital over the years. Thank you to my wonderful husband who has truly shown me the meaning of unconditional love and companionship and who has stuck by me and taken care of me with a smile on his face and love in his heart. Thank you, everyone, for your help, your apologies, and your love.


Love,
Kaitlyn Rae Ryan


THE FACTS:
https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

* Ehlers–Danlos syndrome (EDS) is an inherited connective tissue disorder with different presentations that have been classified into several primary types.
* EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen.
* The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic.
* People with from EDS are often misdiagnosed with hypochondriasis, depression, chronic fatigue syndrome, and other conditions because EDS is considered an invisible disability and there is generally poor knowledge about EDS among practitioners. Many sufferers of EDS have psychological difficulties as a result of frustration with the medical system and the socially inconvenient combination of appearing normal while being in severe pain.
* There is no cure for Ehlers Danlos Syndrome. Treatment is palliative.
* Orthopedic instruments (e.g., wheelchairs, bracing, casting) are helpful for the prevention of further joint damage, especially for long distances, although it is advised that individuals not become dependent on them until there are no other options for mobility.
There are 6 recognized types of Ehlers–Danlos syndrome. Although the classifications are well defined, it is rare for a case to fit neatly in a single category, and cross-over symptoms lead to under-diagnosis or mis-diagnosis. Therefore, patients should not rely on the "fact" of having a certain type of EDS if cross-over symptoms are evident because of possibly life-threatening symptoms.
* Hypermobility (Type 3): Joint hypermobility is the hallmark of this type, with less severe skin manifestations. Joint instability and chronic musculoskeletal pain are particularly prominent in this type. Patients with the Hypermobility Type experience frequent joint dislocations and subluxations (partial/incomplete dislocations), with or without trauma. As a result, pain is a common, severe, and a lifelong symptom of this type. Additionally, osteoarthritis is common, and many get it earlier in life than expected.
* Vascular (Type 4): The vascular type is considered one of the more serious forms of Ehlers–Danlos syndrome because blood vessels and organs are fragile and prone to tearing (rupture). Many patients with EDS type 4 express a characteristic facial appearance with very easy bruising and propensity to develop ecchymoses (bruising without trauma). About one in four people with vascular type EDS develop a significant health problem by age 20 and more than 80 percent develop life-threatening complications by age 40.
* Prognosis: The outlook for individuals with EDS depends on the type of EDS they have. Symptoms vary in severity and the frequency of complications changes individually. Some people have negligible symptoms while others are severely restricted in their daily life. Extreme joint instability, chronic musculoskeletal pain, degenerative joint disease, frequent injuries, and spinal deformities may limit mobility. Severe spinal deformities may affect breathing. In the case of extreme joint instability, dislocations may result from simple tasks such as rolling over in bed or turning a doorknob. Secondary conditions such as autonomic dysfunction or cardiovascular problems, developing in any type, can affect prognosis and quality of life. Severe mobility-related disability is seen more often in Hypermobility-type than in Classical-type or Vascular-type.

Although all types are potentially life-threatening, the majority of individuals will have a normal lifespan. However, those with blood vessel fragility have a high risk of fatal complications. Arterial rupture is the most common cause of sudden death in EDS. Spontaneous arterial rupture most often occurs in the second or third decade, but can occur at any time. The median life-expectancy in the population with Vascular EDS is 48 years.


EDS is a lifelong condition. Affected individuals may face social obstacles related to their disease daily. Some people with EDS have reported living with fear of significant and painful ruptures, their condition worsening, becoming unemployed due to physical and emotional burdens, and social stigmatization in general.

Donations 

  • Anonymous
    • $50 
    • 6 yrs

Organizer

Kaitlyn Rae Ryan
Organizer
Quindalup WA

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