Scleroderma Angel Foundation 22160 NE Butler Mkt Rd Bend, Oregon 97701
Donating to Scleroderma Angel Foundation helps fund Scleroderma Awareness Public Service advertisements to let patients know they are not alone. It is important whether they have already been diagnosed or they are experiencing symptoms that are scary and don’t know where to turn to for help.
Sclero in the Greek language mean Hard Derma is skin which confuses people into thinking if you have Scleroderma it only involves the skin but it goes much deeper than just hard skin. Our bodies have Fibro-blast connective tissue cells that appear to explode, causing an over-abundance of Collagen (scar tissue) to build up throughout the body causing the kidneys to fail and the lungs to quit breat…hing naturally. The fibrosis (scar tissue) can buildup in our hearts and in some patients affect the liver. Research is currently looking into what or why these connective tissue cells explode and cause irreversible damage in hopes of finding a cure in the near future. There are mainly two types of Scleroderma: Localized or Systemic. Systemic Scleroderma consists of Limited (used to be known as Crest) and Diffuse. Systemic is considered to be the worst of all autoimmune diseases because it affects the internal organs. Before 1980, Scleroderma patients mostly died from Renal failure until Dr.’s started treating the kidneys only to have them die later from lung disease and currently Dr.’s treat all Scleroderma symptoms in hopes of stopping the progression of the disease and giving patients a better quality of life. If we have Scleroderma we most likely will have more than one or two other autoimmune diseases. Our immune systems don’t protect the body from harmful and nasty bacteria. Scleroderma symptoms overlap Lupus, RA and MS making it difficult and confusing to diagnose especially if Dr.’s don’t specialize in autoimmune diseases which is why many Dr.’s choose not to specialize in Scleroderma once they leave medical school. Many people don’t realize how lack of Scleroderma trained Dr.’s are affecting Scleroderma patients to get a timely diagnosis and the right treatment for their symptoms. Scleroderma affects us physically, mentally and emotionally because the symptoms cause pain that can’t be seen and as much as we suffer, most of us look normal and healthy. Physically, Scleroderma causes pain, swelling and loss of range of motion restricting movements using arms/hands. legs and feet, there is muscle weakness, shrunken mouth, tight, hard and skin discoloration is also common for some patients. Mentally Scleroderma wears a patient out because of chronic pain, medications, exhaustion/fatigue, making us feel lonely, lost and sometimes hopeless because we look normal and healthy to others. Emotionally it triggers severe depression and we react with our raw emotions because we can no longer think straight, this is what chronic pain/suffering and lack of understanding does to Scleroderma patients. I know people think because I look so healthy that my Scleroderma is gone but not the case at all. These are some of the many reasons why I am committed to raising Scleroderma awareness until I die. I choose to have a good positive attitude for 99% of the time but I do get tired of the 24/7 pain sometimes but once I admit it then I’m ok until the next time. I love life, I love who I am, I love GOD and I am blessed with an awesome husband of over 50 years always here for me. Angel hugs with healing prayers
Awareness and knowledge of Scleroderma helps alleviate the fear associated with Scleroderma.
Please help Scleroderma patients now!
Financial help with media, workshops, conferences, be on our board.
Volunteer in our spring fun run/walk, and fall patient conferences,