Sclero=hard in Greek language – Derma=skin
Systemic Sclerosis is characterized by formation of thickened collagenous fibrous tissue, thickening of the skin, and adhesion of the skin to underlying tissues. The disease, which may be preceded by Raynaud’s phenomenon, progresses to involve the tissues of the heart, lungs, muscles, genitourinary tract, and kidneys.
There is much to learn about this affliction – a nasty, unknown and incurable disease, but unfortunately not many are studying it. The causes, the treatments, or the cure.
Where can you learn more? From those who have it – babies (very rare), to teenagers (uncommon), to to women and men of every age, and their families. This is truly a devastating disease that steals life a little bit at a time – or all at once… and you never see it coming.
Take a moment, won’t you? I know there are many worthy causes – and I don’t want to distract you from them – and this one is no more special or heart wrenching than the other except that…
My daughter’s mother has it; my partner of many years. It saddens me to see the progression of all her bits slowly hardening, doing it today and not being able to tomorrow; always smiling, always trying to educate someone about how her life is, but not many really understanding. People are compassionate – and I am sure you are too, but there is just so much going on in our busy lives. If it moves you, please take a minute to have a look.
My opinion (my bride and others I cherish who have scleroderma will likely not like how I say this), is that systemic sclerosis is a horrible way to die. Knowing the end, but not knowing when, what will fail next, how much will it hurt, why no one knows how to stop it, how much your loved ones hurt for you, but you can’t comfort them because you can’t comfort yourself.
With all the dear friends found because of this disease, and friends who have stayed with and understood, it is a bit easier, but at the end of the day, those with this disease walk a lonely, unknown path.
I have no answers, just hoping for a bit of your time. After all in this new age of instant communication, you are all part of my family – and family listens.
One resource: http://www.sclerodermaangel.org/ – there are others.
Scleroderma is a chronic often progressive sometimes fatal autoimmune disease caused by the immune system attacking its own body tissues changing patients quality of life including everyone associated with a patient. The 1st documented case of Scleroderma was in 1753 by a Scotland doctor yet the 1st scientific research wasn’t started until the mid-1980’s. There are between 300,000 & 700,000 Scleroderma & MS patients in the United States. MS is well known and easier to diagnose but Scleroderma is a difficult confusing incurable disease to diagnose which leaves Scleroderma patients fighting as advocates to get Scleroderma recognized as the life-threatening disease it is. Scleroderma to date cannot be prevented nor can it be treated (only the symptoms can be treated)Scleroderma does not discriminate and can happen to anyone.
Patient perspective; Most patients look normal but damage is messing up the inside of our bodies. It is hard to understand how we can look good yet we can’t function like we used to before Scleroderma. Fibroblast cells in our bodies explode building an overabundance of Collagen, thickening and tightening our skin making it difficult to open our mouth, get a needle through the skin for blood work or insert an IV. We lose range of motion in our arms and legs making it uncomfortable to walk, brush our teeth or comb our hair. This is a huge part of SCLERODERMA!
There is no preventative treatments, no one is immune from the disease. The earlier the diagnosis the better chance a person has of having a better quality of life with the symptoms treated. Please help Scleroderma patients now.
100% of your financial donations will produce the media needed to further the education and awareness of this dibilitating disease through media produced locally and around the world.
Currently it can take years to get diagnosed with Scleroderma because it is married to Lupus and overlaps Rheumatoid Arthritis and Multiple Sclerosis making it harder for patients to get the proper medical treatment for their symptoms. 90 to 95% of Scleroderma starts in the hands with Raynaud’s phenonmen, some patients suffer with Raynaud’s for years before Scleroderma shows up while mine showed up within a few months although it still took 1 1/2 yrs to get diagnosed with Scleroderma. Other symptoms are weak, painful muscles, swelling, skin becomes tight, leatherlike and painful. The mouth shrinks making it hard to brush our teeth. Swelling in legs, knees makes it hard to squat because knees can’t bend making it hard to put pants, socks and shoes on. The swelling and tightness in hands and arms make it hard to reach and grasp anything and for most, our hands become claws because the skin is so tight it draws our fingers down into palm of hand. There is also mental and emotional symptoms.