Patient to Patient Experience Symposium
Team Member: Karen Baker
EVENT DATE Nov 18, 2016
Liz Morasso wrote -
On borrowed time but its 36 + years later
June is national Scleroderma month, a way of increasing awareness of this rare autoimmune condition. By definition Scleroderma means hard skin. Not just on the outside, scleroderma is “Skin deep”. Scleroderma causes inflammation and thickening of the heart, kidneys, lungs, blood vessels, and the whole tube, from the mouth to the gut. Imagine each body part trapped in a metal strait-jacket that steadily tightens. When the metal straight jacket is around the gut, food gets stuck in the throat and gut and nothing moves or things race right through. When it affects the lungs, regular breathing is painful, getting up from a chair can be exhausting and walking 6 feet is exhausting. Around the blood vessels, fingers and toes turn white, blue and black - air conditioning, a breeze or even holding an ice cold glass of water can trigger this. The blood vessels clam down and stop working and blood flow to the fingers and toes is stopped.
I say I’m on borrowed time because of how I was diagnosed and what my parents were told. Things started going bad when I was really young. My mother a physician, watched helplessly as her only child turned from a chunky, lively child to a skinny child that could hardly walk or eat. The diagnosis actually came by accident 3 years later. A simple trip to the mall ended up being 5 day stay at the local hospital and another 3 weeks at a specialized hospital 2 hours away. I remember running after my mother to cross a busy road then waking up in a hospital bed. My mother remembers turning around and seeing me lifeless in the middle of the road, blood gushing from my head and a car screeching to a halt. I had tripped, fell, hit my head, and was un-coconscious. Many falls ended this way; waking up in the hospital and be told I fell again. I would miss school weeks at a time. My parents exhausted their vacation days so at least someone could visit me each day in the hospital. The hardest part of my days is when they left. I missed them, I missed my friends and I blamed myself for falling. In the mind of a young child I would tell myself, “If I just stay at home and not play with my friends, then I won’t end up in the hospital”.
After another major fall landed me at the specialized hospital the confused doctors tested me for everything possible. Finally I was diagnosed with Scleroderma. These physicians had never seen it in a child yet alone an African child. The books at the time said Scleroderma was found in Caucasian women of child bearing age. That’s how special I was! As the doctors told my parents the results of the tests, it sounded more like a terminal diagnosis, “Your daughter has failed all the tests, the heart can barely move, the kidneys are too scared, same with the lungs, and the gut is just as bad. It’s just a matter of time, It is best she spends her last days at home with mum and dad instead of a hospital bed”.
Even though the providers at the time gave up on me, my parents did not. My mother knew I just had to keep moving. I had a daily exercise routine (that I still follow to this day) and my dad remembered I did better when I was eating my native food. It’s organic, non-processed and low in saturated fats. Now a days this is called a “healthy lifestyle”. How the foods we eat, how we move and how we manage stress can affect how we feel and can affect the autoimmune condition itself.
Glad to say 36 + years later, I have outlived all those doctors. Along the way, I’ve earned my Doctorate in Public Health with a sub-specialty in Chronic Disease Management. I advocate for Scleroderma and those with chronic conditions. Now, I want to put on a fun and unique retreat for scleroderma patients and their health care providers. Let me tell you why…
Whenever I attended conferences I seemed to learn more from the patients that attended than the actual health care presenters. I know they mean well and usually what they present to their fellow colleagues they present to us. However from a patient’s perspective it is nerve racking to keep hearing what can go wrong, how bad our condition can get, when you did not think news could not get any worse, the doctors tell us there is no cure. As a result, a group of us patients kept meeting and sharing what worked and what didn’t at these conferences. We built our social networks across the country and called on each whenever we needed support. The majority of the solutions were lifestyle related, yet no one was talking about or showing patients how to do it right. Persons impacted by scleroderma need to understand the biology and physiology of autoimmune conditions and how specific foods and activity can affect them. For us, the next logical step was let’s put on a retreat and share lifestyle related strategies that patients can apply and improve on their quality of life. Provide a place where we can make the connection so that patients can see how research proven that lifestyle changes can work for anyone. For those with autoimmune conditions, results are even better.
This retreat is unique. Here, patients and health care providers will learn and experience how lifestyle changes make them feel. Because research shows, doing some form of activity during early twilight hours boosts energy and makes the cells happy, we will have sunrise walks. We will learn how to manage a rare autoimmune/ chronic condition and still be contributors to society. Retreat goers will learn how to work with insurance companies so treatments and medications are not denied. Teach them how to manage their autoimmune condition so that they know when and how to seek advice from a specialist. We will taste delicious anti-inflammatory foods and experience how they make us feel. Many of us have severe food allergies and sensitivities that can cause Fibromyalgia, Rheumatoid Arthritis like symptoms and “Foggy brain” - we will have workshops that teach how manage these health issues. We will learn how to advocate at the local level, to teach others about rare autoimmune conditions, so that we can influence policy and funding for more research and treatment. Finally, everyone will learn how to use laughter, art, crafting, blogging and singing as a way of reducing stress and lower blood pressure as a means to creating a positive social support system. Everyone will leave the event with solid supportive networks they can rely on after the retreat.
By conducting this retreat with physicians and patients and their families, we can help educate primary care providers from the patient’s perspective. An example of the disconnect between science and knowledge regarding scleroderma happened when a Scleroderma patient was diagnosed with Carpal Tunnel Syndrome for 18months, in that time she lost 40% of her breathing capacity. This is when Scleroderma was diagnosed. The physician had never heard of Scleroderma. Unfortunately this happens on a regular basis. Let’s not let this continue. As we wait on cures, let’s empowers those living, to manage their health with simple lifestyle strategies.
You donation will allow patients on a fixed income to attend the conference and empower them to take better control of their health. Patients that feel good are more likely to return to work, use less the healthcare dollars and become social agents of change for other patients.
We hope you can help.