Guest post by Georgie from https://www.georgiexoxo.com/
The 29th of June is World Scleroderma Day, but of course, each and every single day is important for all of us suffering from this condition. Every single day we are always fighting for our voices to be heard and to raise awareness for this very rare condition.
Scleroderma is a rare and progressive immune system disorder (with similarities to Lupus) that is caused by the immune system mistakenly attacking healthy tissues, leading to damage and scarring of the skin and possibly other organs. This post will serve to highlight Scleroderma and reach as many people as possible on this important awareness day.
What is Scleroderma?
Scleroderma is a very rare, chronic disease of the immune system, blood vessels, and connective tissue that affects up to 2.5 million people worldwide including about 19,000 in the UK.
Whilst Scleroderma is a horrible life-changing disease, but it’s also a disease in which no two cases of Scleroderma are ever the same. There are mild cases and then there are life-threatening cases.
Like Lupus and similar, Scleroderma is an autoimmune condition, meaning that the immune system becomes overactive and starts to attack healthy tissue in the body.
The hallmark of Scleroderma is the excess of collagen that Scleroderma creates starts to affect the skin, joints, tendons and internal organs and can cause scarring, by stopping the affected parts of the body from functioning normally.
What are the symptoms of Scleroderma?
The symptoms of Scleroderma will vary for each person, and the severity depends greatly on which parts of the body are affected. My posts will, of course, come from my own perspective and understanding of this condition and I cannot speak for everyone who has Scleroderma. For me, my Scleroderma affects my digestive system greatly, as well as severe joint pain.
Nevertheless, the usual symptoms include hardening of the skin, swelling of the hands and feet, joint pain
and stiffness and blood vessel damage leading to a physical over-reaction to cold or stress, called Raynauds’ Syndrome.
There are two main types of scleroderma, ‘localised’ and ‘systemic’:
Localised Scleroderma is divided as follows:
● ‘Morphea‘: is the name given to localised patches of hardened skin that are smooth and shiny. Usually, they appear on the trunk, but they can affect any part of the body. They are
painless and there are normally no other problems or symptoms.
● ‘Linear‘: with this scleroderma the skin affected is in a line, usually along an arm or leg.
The skin appears shiny, miscoloured or scarred, and often feels tight and uncomfortable. In children, it has to be monitored carefully as the normal growth of limbs can be affected.
Systemic Sclerosis is divided as follows:
● Limited Systemic Sclerosis (my diagnosis): People have normally lived with Raynaud’s syndrome for a long time. The condition progresses gradually, and usually only affects the
face, hands, arms below the elbow, feet and legs below the knees although the lungs and digestive system (for me it already is) may be affected over time. Symptoms can include
thickening of the skin, heartburn, and problems with swallowing.
● Diffuse Systemic Sclerosis: it is more likely that the whole body will be affected, and in some cases, there can be potentially serious complications involving the heart, lungs, and
kidneys. Common symptoms include fatigue, joint pain, and stiffness.
Where can I find resources and support?
To everyone reading this with a chronic illness, I know you will understand me when I say that to accept that modern medicine can’t restore us is an ongoing grieving process.
So often the choices and compromises seem unfair and without reprise when battling a chronic illness and there are many of these double-negative decisions to be made most days that people just don’t see that naturally has felt like a huge dark cloud.
If you have recently been diagnosed with Scleroderma, or identify with some of the symptoms then I have a list of valuable resources that I highly recommend that can provide support for you as you go through this.
It would mean the absolute world to me and the many other people that suffer from Scleroderma if you could share posts from this post to truly spread this awareness not just today, but every single day.
Scleroderma Resources:
● https://www.nhs.uk/conditions/scleroderma/
● https://www.sruk.co.uk/scleroderma/what-scleroderma/
● https://www.webmd.com/skin-problems-and-treatments/scleroderma
● https://patient.info/doctor/systemic-sclerosis-scleroderma
Thank you so very much for taking the time to read this post about Scleroderma Awareness Month. For more resources and posts about my life with Scleroderma, you can find my blog here.
A huge thank you to everyone who engages with this post.
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