For those of you who don’t know my wife Fleur, thank you for taking the time to read her story ...
FINALLY … A DIAGNOSIS. ELHERS DANLOS SYNDROME
My wife has recently been diagnosed with a rare incurable genetic condition called Ehlers-Danlos Syndrome (EDS) through the genetics unit of the Royal Melbourne Hospital. After a lifetime of suffering countless and apparently unconnected physical issues and being told ‘there’s nothing wrong’ by a myriad of health professionals and specialists – we finally have an answer.
Currently there is no mainstream cure for EDS but we have discovered the Spero Clinic (https://thesperoclinic.com/) in Arkansas, USA, which has helped numerous EDS sufferers like Fleur live a “normal” life and we are desperate for your help to get Fleur there for treatment as soon as we can.
What is EDS?
EDS is a multisystemic, connective tissue disorder. It affects the production and use of collagen which means every organ and tissue of her body is affected in some way making this disorder very complex, confusing and debilitating.
The irony with EDS is many people look “fine” from the outside, but in fact are struggling day to day with intense pain and varied physical impediments.
Patients are given a depressing prognosis of having to live with their symptoms and manage the pain as best they can, usually through copious amounts of prescribed drugs which Fleur isn’t able to take.
Fleur has suffered from severe constant vertigo for 15 years which can make her so sick she vomits and falls flat on her face, making her suicidal in the past. She has daily excruciating subluxations and sometimes dislocations to her shoulders, hips, knee, ribs and thumbs.
Fleur’s lowered immune system has led to many infections and hospital stays with pneumonia. She has two heart conditions; Mitral Valve Prolapse and Supraventricular Tachycardia (SVT) which is absolutely frightening for her (sometimes her heart rate reaches 270 bpm for over 20mins feeling like death is imminently possible, leaving her exhausted for days). Her SVT attacks are becoming more frequent (up to three times a week) causing lots of stress and requiring many ambulance trips. Each SVT attack puts increased strain on her heart.
Fleur has multiple blood disorders, eye disorders and neurological conditions. She also has frightening choking episodes due to gastroparesis, allergies and intolerances to many foods and drugs and the list goes on and on.
Unfortunately, the mainstream treatment for most of Fleur’s issues including her heart conditions is drugs or surgery which aren’t possible due to complications with Fleur’s EDS.
All of this has resulted in Fleur becoming mostly house bound as she is too frightened to ‘have a heart episode’ when in public. Her main outings and social interaction each day are to her medical appointments and physical therapies.
THE BACKSTORY - FLEUR IS A FIGHTER
10 years ago, Fleur become so unwell she had to stop her job as a nurse (which she has never been able to return to) and became bedridden for a whole year, wasting away to a tiny 40kg. She couldn’t feed herself and had to use a porta potty next to her bed that we would lift her on to. We had to move in with my beautiful parents for 3 years who along with myself became her full-time carers.
At the time she was diagnosed as having Fibromyalgia / Chronic Fatigue Syndrome (CFS), but we now know the fatigue was just one of the many symptoms of her EDS. After recovering from CFS, she had to learn how to walk again through years of gruelling professional physical rehabilitation.
After finishing her physical rehabilitation, Fleur started her own newborn photography business. This allowed her to work the limited hours she was physically able to in order to try and help pay for her medical costs. Sadly, not long after, she had to stop as she was constantly cancelling client appointments due to her ill health. This was devastating as she LOVED photography and was so talented at it.
Fleur’s EDS is worsening with age. Although she’s had this her whole life, her suffering has increased considerably over the last 11 years and especially in the last few years where there has been a progressive, debilitating decline in her health.
LIGHT AT THE END OF THE TUNNEL
To keep fighting every single day whilst enduring so much pain and suffering is heartbreaking to watch. I have witnessed how dedicated Fleur is to all her therapies to try and help herself improve in any way possible. She’s one of the strongest, most determined people I know.
We have searched for anything that may help Fleur feel better than what she currently does. In our search we found the Spero Clinic with an intensive program that has been helping many EDS patients make massive recoveries. It’s not a cure but gives people with EDS a more normal life of work, socialising and fun.
We recently talked to a mother whose daughter attended the Spero Clinic a few years ago. Her daughter had the same EDS symptoms as Fleur and her health had deteriorated so much that she was bedridden and hadn’t attended school in over six months. After 12 weeks of therapy her daughter was able to return to a normal teenage life and even be part of her high school cheerleading team (which is utterly amazing for someone with EDS). She remains healthy to this day. Hearing her story brings us so much hope.
We are desperate to get Fleur to the Spero Clinic. Our aim is that after this targeted treatment she can live the life she deserves, one that most people (including myself) take for granted. Both Fleur and I have missed out on so much this last decade. She puts on a brave face, but we don’t want to continue living this way.
HELP FLEUR GET HER LIFE BACK
The Spero Clinic costs approx. $3,000 US / $4,500 AUD a week to attend and the average stay is 10-12 weeks, so we need at least $45,000 AUD to 54,000 AUD just for the treatment (accommodation is extra).
We are not normally the type of people who ask for help but the financial burden to date has been extreme. Over the past ten years we have spent well over $250,000 on medical and health costs. We have done our best to do this on our own but now we really need your help to give Fleur the best chance of a normal life.
Any donation would be amazing. With your help Fleur can rise above her condition to lead a normal life.
Thank you so much for taking the time to read Fleur's story. I can’t wait for the day that Fleur can wake up and just feel good. The Spero Clinic in Arkansas, USA is the last shot we have at helping her achieve this.
If you are able to donate and/or share, it would mean the world to Fleur and myself
With hope and gratitude
Ryan & Fleur
- Johnny Hsieh
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