ZeraphicZebra Life

 so today I received this letter from my hospital in the mail. 11 diagnosis 's including Myelodysplasia ‌Hi my name is Sarah-Marie,
I'm a Medical Zebra, a Zebra in medical lingo is a metaphor for someone with a rare condition because when doctors are trained to see only the most common of causes for symptoms they don't have the ability to know how to see our stripes because they've been trained to think (common) or horses before considering someone could indeed be suffering from a condition that is rare. I've had Ehlers Danlos Syndrome all my life, I never wondered why my so called "Party tricks" were particularly entertaining for others, even as a child when I woke with my hip dislocated neither myself or my parents thought much of it, my easy bruised skin was never considered an indication that something was wrong with my body, my headaches & terrible pain was put down as just "Growing pains" because so little was known of Ehlers Danlos Syndrome in the 80's. It was named Elhers Danlos in 1997, but years ago Doctors from oversea's recognised it's link to other genetic conditions like Marfan Syndrome for one. I also have Systemic Lupus Erythematosis, I've lived a life like anyone else, had the same struggles, hardships & without any family support I've survived them all, after growing up in State Institutional care, after my family unit broke down & I could say I'm lucky to be alive, but that's an understatement. I've led a reasonably independent adulthood until last year I was able to get around easily, enjoy the outdoors, Food & all that it means to us all. Food has always been one of my favourite things in life, especially at parties for Christmas, Easter, birthdays, something I'm yet to deal with as these days come around again now.
I never thought one day my system would suddenly be attacked to the level it has due to something that seems so simple "Collagen" of all things to be missing, just never even crossed my mind. I'm still astounded to think all along it was the very genes that utilise proteins & fats to make such a vital micronutrient that protects us all, a glue that keeps us together.
I've been struggling without a voice that could explain my strange symptoms efficiently enough to the doctors trying to treat me. I've gone along as quietly as I can for all my life, thinking it was normal to have so much pain, joints going in & out & a whole range of problems with my heart as well. In recent times the amount of bullying from a few people has shown me that there are some out in this world who would stop at no lengths to discredit another's attempt to ask for the help that they need to keep up the good fight for their own lives and that will even troll on people who they don't know anything about to feel better themselves. I find this sad, repulsive behaviour disgusting & although I've forwarded on to police the information of these few people I remain true to myself & my core belief that for every nasty person in the world there are twice as many who are wanting to support anyone else who is also fighting on to do good for people in the community. The fact that I have evidence of my health struggles with EDS, PoTS, Autonomic Dysfunction, SADS & other conditons shows I am still able to show integrity to my own truth is proof of the human spirit at best. Last year was my biggest revelation of all my adult life, where I realised I either live well whilst I still have a life & hope to do all or any of the things I used to take for granted or I give up. I still am fighting, like all of my herd. Most recently though, I've been really struggling day to day things, like walking for example, I will be walking & my ankle with give way, or my hip will slide out sending shocking pain everywhere as well as trying to manage dysfunction of the nervous system in a variety of different ways. I find solace in raising awareness by participating in FRACP & FRACS training exams to help doctors know what to look for to better diagnose connective tissue disorders whenever I can.
Since then I've been having to attend hospital appt's regularly, be admitted to hospital for treatment, tests & emergencies due to complications from my condition. I have recently been Diagnosed with GI insufficiency which has taken away my ability to eat anything solid. I'm under one of the best of doctors in the world for my GI issues but it's very hard to do much of anything when my body is weak from not being able to orally take in calories, like I used to be able to do. I'm setting up this blog because I will need to wait for my PEJ which will have additional costs to run & expenses that may also be incurred from my specialists who are majoritively private. I am now in the HENS program thanks to my wonderful specialists of most recent times, my feeds are starting to help me feel stronger with my fight for what is everyone's basic right of having the best life they can. The system of Tube feeding is to bypass my Dysphagia (issues with swallowing) then to bypass my oesophageal tract, stomach &  will feed me via my first portion of my small bowel near the duodenum (the healthiest part of my system) a lot of my friends know what it's like to have a rare condition. My friends are my family, I have been in care since age 10-11 & am estranged from my Biological family due to my condition that they never knew I had either. I've tried to contact them to no avail & in contrast I hope they are able to get medical care for any condition that is like mine due to EDS being inheritable. It is a gene deduction or mutation that causes it to happen. COL3A1, COL5A2 & COL5A1 are the main genes missing in my DNA. My siblings may not know they have this condition & I wish I could let them know about it but I can't seem to connect with them. I am in need of  some aids I can't claim on my private health fund & I really need to get them if I'm to further my studies in Cert IV Liberal Arts so I can support myself. Vascular EDS has the highest risk for spontaneous rupture of vessels, organs & all mucosal membranes. Long QT Syndrome is potentially life threatening, where arrythmia's can lead to sudden cardiac death from VF. The average lifespan expectability is 48 yrs of age, I have a good 10 years left to do this & be able to enjoy my life as best I can, but I'll need help, meaning I will need extra funds to afford the medical expenses needed to care for my nutritionist and specialists that are providing my healthcare management  & some aides as well as some community nursing care to help me keep active in the community which is one part of the key points to surviving & managing the issues related to EDS best. I also have Autonomic Dysfunction with high Nuerological involvement in my case, often misunderstood & labelled to be of Psychiactric origin. I have been brandished by one lady as having a severe psychiatric condition for a few years, she is being watched online by police. Although I do have trauma from my childhood, this is unfounded. Even if you can't afford to donate, pls share this page for me. I ask everyone of you that see my page to do me a small favour (especially if you love hot potato chips) & who doesn't??pls next time you eat them, can you pls eat a few for me?? No sadness allowed, just think of me when you eat a few, so I know that somewhere in the world someone is enjoying my favourite food so maybe one day when I can get a cure I will be still able to buy them somewhere  & once again enjoy them as I used to do. Currently I've been two entire weeks without any solid foods at all. I am encouraged by the strength of the human spirit & the warmth I've witnessed by people who inspire me, they are the fighters, the Warriors of any condition that is potentially life threatening. I look after my body the best I can, I am like anyone else inside & have dreams, aspirations to be the best person I can possibly be in this world & contribute to humanity, society, community & show life appreciation for all the wonderful things I've been given. EDS has taken a lot from my body, exhausted me as a person, seen people get "their wings" & leave because they were so unwell as a result of the complications. I've witnessed friends suffer terribly due to complications because funding is limited in research to find better ways to manage each person's different case appropriately, leaving them with both high medical bills & lack of hope. I want to raise awareness for EDS & all related conditions as well. If I get to finish my Uni course, I want to pursue a career in Arts somewhere helping others learn how to inspire worldwide & feel the compassion that I have witnessed throughout my life from others. Because of all the costs involved with getting braces, medications, vitamin supplements, transport, medical care I've not been able to afford my needed feed equipment whilst waiting  for surgery. I have thankfully had some nice police officers attend my home recently to speak with them regarding the bullying on here from a few people who I've now removed comments from. They were very helpful & are now aware of the people who have been trolling my blogs and then leaving nasty untruthful comments about me in the comments. Police have their details & as advised I've rewritten my blog & provided more information, photo's & video's as well as removed those comments. 



Thankyou for visiting, pls share my page... Best of Wishes & Kindest of Regards.
Ms Sarah-Marie McFarlane