Patient to Patient Experience Symposium
Team Member: Cindi Brannum
EVENT DATE Nov 18, 2016
Many of you already know that I was diagnosed with systemic scleroderma about 16 years ago. My doctor had given me a prognosis of 12 years which makes me 4 years past my "expiration date" as I type! Boo-ya doc!! Yay for me!! ;-)
I'm crowd funding today for a unique type of educational weekend that is being organized "for the patients by the patients". In my experience as a volunteer, board director and eventually an executive director; where support and education were mission components, I found that this type of workshops for patients left us all on "information overload", and so fatigued that it took us weeks to be able to function again after attending such an abundant weekend of information. Therefore, I'm partnering with several other patient professionals who want to be able to serve, support, encourage and educate the auto-immune patients with an element of relaxation in an environment that will nourish the mind, body and spirit. Our hope is to give you what you need to live well with your illness along with the education, exercise, hints, tips, and nourishment with genuine support for you to vent, share and/or commiserate with patients (like you); and at the same time present you with a 3-day weekend break from the daily grind of life. Doesn't that sound refreshing?
We will not chock the weekend full of "stuff" that will wear you out but with just enough for you to enjoy and pick/choose what and how much you want to do or not do.
Scleroderma is an auto-immune illness where my body produces too much collagen, so much that the tissues that surround my vital organs such as heart, liver, kidneys, lungs are also thickening and getting harder in addition to the outer skin that you see. In time, those organs will malfunction due to all the scarring and thickening. Having said that, I must tell you that to this day there is no known cause therefore there is no known cure but I hold out hope that our medical professionals who are in the research area of scleroderma will find something in order to cure this devastating illness or, at the very least, find a medicine that will prolong our lives.
Presently, we all take a high-powered drug that suppresses our immune system to slow down the progression of scleroderma but it also causes side effects. Mine helped speed along the interstitial lung disease which is referred to as "pulmonary fibrosis". About 35% of scleroderma patients get PF, then there are others that get PH or PAH, which is pulmonary (arterial) hypertension. The upside of having PH or PAH is there are meds that will allow one to live longer plus lung transplantation is a consideration as well. Not so if you have PF, there are currently no drugs for the interstitial type of fibrosis and doctors tend not to grant lung transplantation to scleroderma patients with IPF due to our gastro issues which I'll explain in the next paragraph.
Along with the lung issues, we all pretty much suffer from GERD or some type of gastro issue. Mine has caused me to eat gluten-free and it alleviates most of my acid reflux but there's no guarantee on that. Another is Raynaud's Phenomenon, where the slightest bit of cold will cause our fingers and toes to turn blue. This is not just in the winter but summer as well, due to the air conditioning. Cold is not our friend and you will find us with socks, boots, scarves, gloves and whatever else is needed to make us feel warmer than the average human being. Since scleroderma falls under the "rheumatoid arthritis umbrella", we suffer the known ailments that come with having arthritis, stiffness with joints locking up, and we also stay in a level of pain that will never, completely, leave us.
Some patients will have severe skin tightening that it will affect their hands to where it stays in a "crooked position", making the simplest tasks like eating or swiping a card at the gas station, or ATM, next to impossible. The face tightening up is something most women want at a certain age but since ours doesn't stop, we look emaciated. Our teeth stick out because our mouth is severely tightened up, and our eyes bug-out because of the skin around our face is pulled so tight. We, the patients, have lost our upper lip, and if you're a lipstick wearer; it's sad not to have plush lips to go with your smile.
There are other symptoms, such as, calcinosis, Sjogren's Syndrome, telangestacia, esophagus tightening, fingers clubbing and even more. We are all different and very complicated to say the least, but there's hope; there is always HOPE.
With all that being said, your 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.
I hope you can help by donating and I thank you for your personal support not just for myself, but for all the people suffering with scleroderma and/or other auto-immune illnesses. May God bless you richly!