Over the past few years or so as I’ve been journeying with Scleroderma, I am often confronted with a comment or statement along the lines of; “But you look so healthy!” and I get it for the most part, I do!
Yes, I have a reasonably nice looking tan (especially on my arms), my skin appears to look reasonably young for a guy that has been around for half a century and who’s remained reasonably active up until a few years ago.
But outward appearances can be deceiving!
A while back even one of the general practitioners that I was seeing for other health related issues said that “just by looking at me, if he didn’t know any better he’d say that there was nothing wrong with me.” On one level statements like those could cause offence, but I’ve grown somewhat used to it.
You see, Scleroderma is more than skin deep.
Recently, I came across a short poem on one of the Scleroderma facebook groups written by Jan Brooks entitled ‘They Could Never‘.
It resonated with me on a number of levels after receiving a course of medications intravenously which has knocked me about for the past few days or so. (You can read about my health updates here)
They could never imagine, what you have to go through, the depth of your pain, and the disabilities too.
They could never understand, how you struggle everyday, just to live your life, in a manageable way.
They could never comprehend, why you feel so much pain, you hurt all over, so hard to survive the strain.
They could never quite believe, just how much you endure, what you really face, forever hoping for a cure.
So, what is Scleroderma?
The term Scleroderma comes from the Greek ‘skleros’ meaning “hard”, and ‘derma’ meaning “skin”.
In essence it causes the hardening, thickening, and tightening of the skin which oftentimes causes devastating results to one’s facial appearance and one’s mobility. As it can also attack the Vascular System, cutting off blood flow to extremities affecting people’s hands and feet.
It can also affect the Gastrointestinal Tract, and other internal organs like the Heart, Kidneys, Lungs, and Esophagus.
It is a rare and debilitating autoimmune disease which currently has no cure. Unfortunately it’s often progressive and sometimes, fatal – affecting every age and gender and it’s neither preventable or contagious. It confuses the best of the medical field by making it difficult to diagnose.
Scleroderma steals lives, families, friends, jobs and so much more.
Scleroderma Awareness Month.
In November 2018 I was initially diagnosed with this rare autoimmune disease hence why I’m doing what I can to help raise awareness of Scleroderma especially during the month of June.
For more information about Scleroderma, please check out my page on it and the links to other Scleroderma websites, or the Did You Know? page which provides interesting facts about the disease.
Please help other people like me “Raise Awareness” of Scleroderma, by sharing links to this blog and information about Scleroderma on your social media platforms with family, friends, and co-workers. As raising awareness of Scleroderma is one of the “Greatest Gifts” that you can give to those who have Scleroderma.
If you are able to, maybe you can help donate monies to one of the following, or create a fundraiser of your own:
The Scleroderma Support and Education New Zealand Trust Givealittle page which has been set up to support & educate people living with Scleroderma, empowering them to make informed decisions regarding their own health care.
The Scleroderma NZ Givealittle page has been set up to raise funds for the national support group which helps patients and their families to cope with this rare and difficult disease to manage.
Thank you for your time! 🙂
Today we continue looking at the video series created by the USA Eastern Territory, which recounts William Booth’s vision, “The Story of Pentecost,” originally published in 1906 in his book, “Visions.”
The life and times of Perry... 