Today marks the start of Scleroderma Awareness Month, a rare, chronic disease of the immune system, blood vessels and connective tissue. I was diagnosed officially in February 2018 however I still struggle daily to make sense of the mystifying elements of this illness so I hope by opening up today I can help inspire and support other people battling chronic illnesses.
Currently it’s estimated that 2.5 million people are living worldwide with Scleroderma, including 19,000 in the UK, with 1,300 being diagnosed every year. So this month, the SRUK is calling on people to #KnowScleroderma better in a bid to both help people with the symptoms find the resources they need, and help friends and family support those that are suffering with this truly cruel disease.
What Is Scleroderma?
Essentially, Scleroderma is an autoimmune condition (similar to Lupus etc), meaning that the immune system becomes overactive and starts to attack healthy tissue in the body.
The name of the condition comes from the Greek, ‘sclero’ for hard, and ‘derma’ for skin. This hardening of the skin can be one of the first noticeable symptoms of the condition, as the body produces too much collagen.
This excess of collagen can then start to affect the skin, joints, tendons and internal organs. It causes scarring and stops the affected parts of the body from functioning normally. Below is an excellent video from SRUK that illustrates this perfectly.
There are a few variations of Scleroderma and I have limited systemic sclerosis meaning that the excess of collagen causes scarring and stops the affected parts of the body such as the heart, oesophagus, blood vessels, kidneys, lungs, blood pressure and digestive system from functioning normally.
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 To Find Help & Useful Resources
Due to the fantastic response that I had during Raynaud’s Awareness Month I’ve decided to start a specific series for the purposes of sharing and raising Scleroderma events and awareness throughout the year. So if you are already suffering from Scleroderma, or think you are and would love advice and support, please do get involved, so that together we can raise awareness of this debilitating condition.
In the meantime, whilst I start creating this series, please include any additional comments you think are important for awareness and educational purposes. In addition please do also share this post with anyone, anywhere, who you think it will have an impact on. I’d also love to hear your requests for posts. Would you like advice posts, recipes, etc?
Once I start the series the posts will be linked and updated in this post for easy reference but I also have a dedicated Scleroderma section right here.
Meanwhile, below are some very useful links to hold dear. A huge thank you to everyone who engages with this post. It would mean the absolute world to me and the many other people that suffer from Scleroderma if you could share posts from this series to truly spread the word this month.
Thank you so, so much for taking the time to read this post and engage in any way you can with this very important awareness month. I’m truly beyond grateful and your constant love and support is the strength that I will use to create the seemingly impossible things xoxo