Grace's story of scleroderma

Scleroderma can sometimes make life hard, but in times of difficulty Grace, who has scleroderma has still managed to find something that makes her happy. Watch the video below together with her story of scleroderma below.

My condition is diffuse cutaneous systemic sclerosis with severe lung involvement Raynaud's phenomenon, kidney – low grade proteinuria, inoperable gallstones, high blood pressure, oesophageal and bowel problems (reflux, bloating, constipation/diarrhoea), type 2 diabetes, osteoarthritis, breathlessness and fatigue to mention but a few!

I was 33 years old when my first symptom Raynaud's appeared few weeks following the traumatic birth of my youngest child during which time I received blood transfusion. I went to my then GPs but they didn't know what it was, didn't understand it and certainly didn't do any tests to see if it was primary or secondary Raynaud's.

I started to get tight skin. I always used to wear nail varnish and so stopped wearing it as I thought it might be something to do with the polish. I also used to straighten my daughters' hair and thought it might be to do with the chemicals (relaxer) used. After continued visits to my then GPs, they diagnosed me with Rheumatoid Arthritis and put me on various pain killers which obviously didn't work.

My scleroderma wasn't diagnosed for nearly 10 years, even though I had Raynaud's, tight skin, reflux and in the end, it was my severe breathing difficulties that flagged it up.

I became very breathless and went to the local A&E. Fortunately I met a young doctor who did tests and x-rays and saw scarring on my chest and arranged my referral to a chest specialist. I was seen at The Royal Brompton hospital and they diagnosed me with Interstitial Lung Disease. However, Dr. Wells of the Royal Brompton also recognised that my other organs were affected and upon further tests I was given the diagnosis of scleroderma.

On diagnosis, I had maximum course of the chemotherapy - Cyclophosphamide and steroids which helped to stabilise the aggressive nature of the disease. I am subsequently on azathioprine, omeprazole, losartan, diltiazem, ascorbic acid, prednisolone, metformin, adcal D3, and oxygen therapies. I also have been on and off some medications that did not agree with me. The side effects often come in forms of facial rash, high fever, nausea, constipation and or diarrhoea. I always contact the prescribing doctor or nurse as soon as I get any side effects and they are usually quite understanding in changing the medication to a more suitable one/s. I also have to use stair lifts at home due to extreme fatigue and breathlessness.

Unfortunately, my condition is so far advanced that some revolutionary medical discoveries such as stem cell or lung transplant (had failed assessment) can't help me. However, I am benefitting from Iloprost treatment which has helped reduce my digital ulcers. I find that herbal teas such as peppermint and Royal breakfast teas (without milk), plus massage (winding after meals) help with bloating.

How has the condition affected you and your job/ relationship/ family life?

Due to the severity of my lung disease, I experience constant breathlessness and extreme fatigue. This resulted in my early retirement at 44 years old, so obviously, that has affected our family income.

Right after my diagnosis, I did tell our two children who were then quite young that this illness was mine and mine alone. This meant that I would not expect them to use my medical condition as an excuse for poor educational or social performance. In effect, they (poor children) had to grow up quite quickly. This attitude I believe has helped them to go through this process that we are still going through. Nevertheless, they still worry about and care for me and I remain eternally grateful to them and their dad.

My husband is the one that has been most adversely affected from the onset of the illness. What with having to deal with house chores, taking care of our children who were then in primary school plus keeping a full-time job. This can be quite stressful for him at times.

In a situation like this you get to know those who really care about you. The illness has kind of filtered my relationship with the people around me including friends and family. I will always be grateful to those who have stood by me especially my husband, children, extended family and my closest friends who still make time to care for, call and or visit me. My physical disability limits my ability to socialise, partially because I am highly susceptible to infections.

My local mobile library service is fantastic as I love reading. I am tall and like to wear long dresses to cover my legs and feet (because of cold), so I also enjoy sewing and making my own clothes when I have help with cutting the fabrics and threading the machine.

Listening to music helps to lift my mood, but I do hate the isolation this condition brings. I know it affects my mental health and well-being as I am a sociable person. It's very difficult for family and friends sometimes to understand that I can accept an invitation one day but not feel up to going the next. One has to spend a week with me to really understand how my days can be so different.

The Royal Brompton Hospital London, still care for my lungs. My other medical conditions such as kidneys, skin, Raynaud's, gallstones, high blood pressure, are treated at Royal Free Hospital and my GP manages my diabetes and high cholesterol. My monthly blood test (done to monitor my full blood count as a result of the Immunosuppressant that I take daily) is managed by my GP and local hospital. I act as the coordinator of my treatments between these medical institutions.

I think my initial attitude towards my diagnosis was that of relief to think that after ten or so years of being told that I should manage my symptoms with pain killers or migrate to a tropical country, the actual cause of my symptoms was diagnosed. Then, with the aggressive treatment and hopeless prognosis, it became that of despair.

I went through self-pitying period. However, it did not take me too long to snap out of it when it became clear to me that the journey through the illness was going to be a very prolonged one. I thought well, if it wasn't me why should it be someone else. No one deserves this horrible decease. Hence, I prepared myself for and have been fighting a long battle against scleroderma!

The journey towards the diagnosis of my condition I suppose is typical of the story of most scleroderma patients. Due to the rare nature of the disease I experienced the frustration of my then GPs not knowing what condition I had hence, unable to make the necessary referrals. Consequently my lungs were severely damaged. This has caused other serious medical conditions which would have otherwise been prevented.

I am glad that thanks to donations received by SRUK, young doctors are now being educated on early signs and symptoms of the disease and also the extensive research carried out with the help of charitable funding, guarantee better outcomes for new patients.

If you think you may have symptoms of scleroderma or are concerned with recommend that you book an appointment with your GP.

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