Hi everybody! I have something I need to share and it’s not an easy topic. Some of you are aware of the situation, but many of you are not. So here goes: It’s time to bring awareness and attention to those of us who, not wanting to suffer from common horrible afflictions that everyone is familiar with, instead manage to come down with dreadful, rare, and as-of -this-moment incurable manifestations that nobody has heard of, sometimes can't pronounce, and that very few people in the world are searching for a cure for. These are anomalies that have no Jerry Lewis-led telethons, huge celebrity-backed campaigns (the exception being Bob Saget), or massive global fund raising efforts on their side. When people are told their names, what follows is usually silence and then, "You've got WHAT?!!!!" So, for my part, let me bring to your attention my evil little sidekick "SCLERODERMA". Not only could I not come down with a disease that is well-known and with a definite cure, I had to get the one with the most unattractive name possible. That figures. But then again, when have i ever done anything half-assed, right?
I joke around as it is the easiest way to deal with the cards that have been dealt to me. But in all honesty, to me and the only 300,000 people in the United States who suffer from Scleroderma, it is no laughing matter whatsoever.
Diagnosed in July of 2010 when my hands became partially paralyzed, I have since then run the gamut of emotions and experienced a wide-ranging smorgasbord of symptoms, all of which suck in their own particular way. While I will not go into details of my current health situation in this writing, I will do so for those of you who would like to know, just send me an email at firstname.lastname@example.org. Suffice it to say that I am always internally and externally suffering in whatever new and horrific way Scleroderma decides to manifest itself daily.
What I would like from you, my dear friends, is to join me at the Step Out For Scleroderma Walk taking place at Crossgates Mall on Sunday, June 10th at 6:30 in the evening. All proceeds are for the Scleroderma Foundation to use to help find a cure for those of us living with this dreadful disease. I will be there along with my husband, Bob and Joan LaMarca (Mommy), as well as friends and family that a lot of you know from Draper, Mohonasen, The Major League, Key West, Rotterdam, etc! I would like nothing more than for this to be a reunion of sorts, to celebrate Living in all its forms and to express my appreciation for all of you who have touched my life through the years. Then let’s go out and party like back in the day!
If you cannot make it to the Walk, I would be forever thankful if you could donate to our fundraising. Each and every dime would be appreciated more than you could ever comprehend.
I want to be around to know all of you for years to come…. Please help me make that happen. Join or donate to my team, “La Spechtaculars”, at the links provided.
To DONATE: https://www.firstgiving.com/fundraiser/nicolelamarca-specht/albany-2012
To JOIN OUR TEAM TO WALK (and/or Fundraise): http://www.firstgiving.com/scleroderma-tristate/albany-2012 hit register, fill out info and at bottom of page click "Join a Team" and find "La Spechtaculars"!
I have included some information about Scleroderma. Please read on after my signature.
Love to you ALL,
Nikki LaMarca Specht
Definition of Scleroderma: Scleroderma is a chronic, degenerative, autoimmune disorder that leads to the over-production of collagen in the body's connective tissue. The word "scleroderma" means "hardening of the skin" and refers to one of the possible physical effects of the disease. Systemic (throughout the body), scleroderma is known as progressive systemic sclerosis.
Description of Scleroderma: Approximately 300,000 people in the U.S. have scleroderma. Women are affected three times as often as men. Although the disease can develop at any age, it most frequently appears in the third to fifth decades of life. It is most frequently a chronic and often progressive illness.
Collagen, a protein manufactured by the connective tissues of the body, is produced in excess in someone suffering with scleroderma. This over-production of collagen can be likened to the process of "scarring," which is the way the body heals a wound.
For persons with scleroderma, the production of collagen is abnormal, depositing it in various organs and/or tissues of the body, especially in layers of the skin.
It is important to stress that the symptoms of scleroderma vary greatly from person to person, as though each person with scleroderma has his/her own version of the disease. Although scleroderma can indeed be serious, most people are able to live a normal life span with varying degrees of discomfort and/or disability.
There are two forms of scleroderma: localized and generalized (also called systemic sclerosis).
• affects mainly the skin in different areas of the body
• may affect muscles and bone
• does not affect internal organs
• is not usually as severe as generalized scleroderma
• does not usually develop into generalized scleroderma
Generalized scleroderma affects the skin and/or internal body parts, such as blood vessels, the digestive system (esophagus, stomach, and bowel), the heart, lungs, kidneys, muscles, and joints.
Generalized scleroderma most often presents as either CREST syndrome or diffuse scleroderma.
CREST is an acronym derived from the syndrome's five most prominent symptoms:
• C - calcinosis, painful calcium deposits in the skin
• R - Raynaud's phenomenon, abnormal blood flow in response to cold or stress, often in the fingers
• E - esophageal dysfunction, difficulty swallowing caused by internal scarring
• S - sclerodactyly, tightening of the skin on the fingers and toes
• T - telangiectasia, red spots on the hands, palms, forearms, face and lips
Diffuse scleroderma appears as thickening of the skin that often spreads from the fingers and hands to the face, trunk or major organs.
Other less common forms of scleroderma include chemically induced localized scleroderma, eosinophilic myalgia syndrome (a disorder caused by the ingestion of L-tryptophan), toxic oil syndrome (associated with contaminated oil), and graft-versus-host disease.
Effects Of Scleroderma On The Body
• Scleroderma in the skin may cause the cessation of hair growth and sweating; and the tightening and thinning of skin over the knuckles or finger joints, resulting in ulcers (open sores) and curving of the digits.
• Scleroderma in the kidney may cause severe hypertension (high blood pressure) and kidney failure.
• Scleroderma in the gastrointestinal tract hampers the action of the smooth muscle that lines the esophagus, small intestine, and colon; resulting in swallowing difficulties, malabsorption of digested food into the circulation, severe constipation and/or possible intestinal obstruction.
• Scleroderma in the lung makes the lungs less flexible and reduces their blood supply resulting in shortness of breath, susceptibility to bronchial problems, and pulmonary fibrosis (scarring and thickening of lung tissue).
• Scleroderma in the heart and pericardium (fibrous sac that lines the heart) restricts the normal pulsation and pumping of the blood by encasing the heart in a shell of sclerosed tissue. This may lead to heart failure.
Scleroderma in the joints causes arthritic symptoms such as inflammation, pain, swelling, stiffness, redness, and, in some cases, joint deformity.
Causes and Risk Factors of Scleroderma: The cause of scleroderma is unknown. It is not contagious. It is not passed on from one generation to the next, except in rare circumstances.
Symptoms of Scleroderma: The following are some of the symptoms of scleroderma:
• Gradual hardening, thickening, and tightening of the skin, usually in extremities such as hands, face, and feet
• Skin discoloration
• Numbness of extremities
• Shiny skin
• Small white lumps under the surface of the skin that erupt into a chalky white fluid
• Raynaud's phenomenon (pain, numbness, and/or color changes in the hands caused by spasm of the blood vessels upon exposure to cold or emotional stress)
• Telangiectasia (red spots on the hands, palms, forearms, face, and lips)
• Pain and/or stiffness of the joints
• Swelling of the hands and feet
• Itching of the skin
• Stiffening and curling of the fingers
• Ulcers (sores) on the outside of certain joints, often the knuckles and elbows
• Digestive problems such as heartburn, difficulty in swallowing, diarrhea, and constipation
• Fatigue and weakness
• Shortness of breath
• Weight loss
• Hair loss
• Internal organ problems, scarring
Diagnosis of Scleroderma: The diagnosis of scleroderma is made by a medical history, physical examination and diagnostic tests. The diagnostic tests may include skin biopsy (removal of a sample of skin for examination) and blood tests.Other tests, such as pulmonary function studies for the lungs, chest X-rays, studies of gastrointestinal function, and electrocardiography (EKG of the heart) may be performed to determine the disease's severity and effect on the internal organs
Treatment of Scleroderma: Currently, there is no cure for scleroderma and treatment involves alleviating specific symptoms associated with scleroderma.