Imagine waking up one day to find that your skin has hardened. Your skin growing extra layer upon layer to the point where you are unable to bend or move any of your limbs.
This is the reality that my mum is facing. Slowly her body is turning to stone.
Almost 2 years ago she was diagnosed with a debilitating disease called scleroderma. It causes hardening of the skin and affects the internal organs like the heart, liver and kidneys. It is a life-threatening disease. There is no cure.
You have probably never heard of scleroderma. It affects approximately 5000 people nationwide and while research is ongoing there is so much about this disease that we know nothing about. We are hoping to change that.
Last year we started a legacy to raise awareness and money for ongoing research to hopefully find a cure, we put on our walking shoes and walked over 470km (500,000 steps) from Narellan to Ariah Park (a little town in the Riverina) raising over $30,000.
This year we have raised the bar, we are going to walk further than before over 500km in 2 weeks from Port Macquarie to Narellan from 15th June 2018 – 29th June 2018. It will be an epic journey following the coastline, we will be climbing hills like we have never climbed before. It’s going to be an incredibly difficult walk but we are up for the challenge.
To put that into perspective that is almost 40kms every day for 14 days. The equivalent of walking a marathon every day for two weeks. No easy feat. But it is nothing compared to what people living with Scleroderma go through every single day.
We are raising money to provide support for those with Scleroderma, and to help Scleroderma NSW with their research efforts.
Help us raise awareness and find a cure for Scleroderma by supporting our journey!
What is SCLERODERMA?
Scleroderma is an autoimmune, rheumatic, and chronic disease that affects the body by hardening connective tissue. (“Connective tissue” is widespread. It adds strength to organs and other parts of the body.) Connective tissue is made of many kinds of proteins. Among them is collagen of the skin. Scleroderma literally means hard skin.
An Illness of the Immune System
Scleroderma is classified as an autoimmune disease. This means that a person’s immune system works against itself. The normal immune system protects the body by fighting off foreign invaders such as viruses and infections. In an autoimmune disease, the immune system mistakes a person’s own tissues as foreign invaders and sets up a protective attack that backfires to cause problems.
In scleroderma, cells start making collagen as if there were an injury that needs repairing. The cells do not turn off as they should and end up making too much collagen. The extra collagen in the tissues can prevent the bodies organs from functioning normally.
An Illness that Varies from Person to Person
The severity of scleroderma varies from person to person. It can be a mild annoyance, or it can cause significant clinical problems. For others, it can become life threatening. Most people have episodes where the illness improves or even goes into remission.
An Illness That Does Not Go Away
Scleroderma is chronic. This means that it lasts for your lifetime. However, like diabetes, high blood pressure, heart disease, and psoriasis, scleroderma can be treated and the symptoms managed. The cause of scleroderma is unknown and there is currently no cure, but there are treatments that can effectively prevent or limit the damage caused by this chronic disease.