How scleroderma and Raynaud’s impact quality of life

Date: Wed 4th December 2019

To give you a little insight into how the conditions can impact a person's quality of life, we asked a few of our community members to share their experiences.

While these accounts may give you some insight, they may not ring true for everyone. As both conditions are variable in how they affect a person's body, there is no single defining factor for how they can impact a person's life.

So, if their accounts are dissimilar to yours, why not share your story with us? We would love to hear more about how both conditions impact the lives of our community, so that we can raise awareness of scleroderma and Raynaud's phenomenon and how it affects people.

Jane Potter, 49, has diffuse systemic scleroderma, which affects her lungs, and she also has Raynaud's phenomenon.

How do your conditions impact your quality of life?

Plan plan plan is the key when you are going out, if it's hot you have to slip on the right clothes, slop on the sunscreen and slap on a hat to keep your skin covered. In winter, I wear layers and more layers to keep warm. I also keep hand and feet warmers in my bag and car just in case to help when I have a bout of Raynaud's phenomenon.

What are some of the things you do to improve your quality of life?

To manage I do regular exercise and stretches to try and keep my body from aching as much. I also use skin creams to help with my skin and eye drops for my dry eyes.

I also have a fabulous partner who helps me daily, and family and friends who understand the condition and that sometimes I may need to cancel at the last minute.

This is a condition that isn't seen from the outside, we look fine, but the aches, pains and fatigue that we deal with daily are hard to explain to people.

The most important thing is to stay positive!

Sue Burgh, 60, lives with a host of different conditions, including scleroderma, lupus, Sjogren's syndrome, rheumatoid arthritis, Raynaud's phenomenon, bile salt malabsorbtion, cardiovascular autnomic dysfunction and pulmonary hypertension.

How do your conditions impact your quality of life?

I get out of breath easily, I am in pain most of the time, and find it hard to carry out day-to-day activities like opening cans (even with aids). Tablets are a nightmare in blister packs or plastic tubs.

Life in general poses problems daily, however, having moved from a house on a hill to a bungalow on flat ground, life is much simpler for me in regards to getting around.

There are too many things that are on the downside, but I choose to look at the positive things in my life, at least I wake up every morning! I have a wonderful supportive family and life is far too short to worry about being ill, life goes on regardless of illnesses.

I try and make the most of what I can do instead of thinking about what I can't do. This doesn't always work and I do have "down days" I must admit, but I try to keep them to a minimum.

What are some of the things you do to improve your quality of life?

I have as many gadgets and aids as I can to help me. I rest when I am tired and I know my limits. If I spend fifteen minutes gardening I know I will pay for it the next day with being in pain and swollen joints, but I've had the enjoyment and sense of doing something so I feel the trade off is worth it.

I can't walk far, so some evenings my husband will drive me to take a short walk with our Cavalier King Charles Spaniel dog. He usually gets a good two- hour walk in the morning, so our walk gives me enjoyment and a sense of having achieved something, even if it is an occasional event.

Apart from that my one major thing we have done to improve my quality of life was to move from the said house in a main town to a bungalow near the sea.

Hannah Stevens, 25, lives with scleroderma, fibromyalgia, hypermobility syndrome and irritable bowel syndrome.

How do your conditions impact your quality of life?

My conditions have a huge impact on my day-to-day life. They impact my mobility and I struggle with severe fatigue on a daily basis. I've also seen the dexterity of my hands reduced, so that I struggle to hand-write for longer than a few minutes at a time.

While my conditions are manageable, my whole life has become a plan. I have to approach life as a series of obstacles and carefully determine how much rest time I will need between each task I attempt.

What are some of the things you do to improve your quality of life?

To try and counteract the impact my conditions have on my quality of life, I plan my weeks carefully so that I always have at least a couple of rest days to account for flare-ups.

I do physiotherapy on a daily basis and I have to be prepared to give myself extra sleep time, as my body needs more rest than the average person. I also try to eat fairly well, but I also allow myself treats! A treat keeps a person sane!

If you are interested in helping SRUK to fund work that will help to improve the quality of life of our community, then please donate today. We rely on the generosity of the community to continue to support groundbreaking research in both scleroderma and Raynaud's.

If you would like information on how scleroderma affects different parts of the body, please visit: Scleroderma and your body

Information on physiotheraphy techniques for treating scleroderma can be found here: Physiotherapy: why, what, how?