What is scleroderma
An introduction to this complex and often challenging condition
Michael Corbett shares with us how his multiple conditions, have completely changed his life, however, his aim every day is to remain optimistic, as fit as possible and happy.
It is difficult to pin point when it all began as changes happened very slowly. Looking back, I think I had the first signs in my mid forty's with Raynaud's purple/blue/white/red hands and fingers in the cold. By 2002 I had started to get ulcerated fingers that were incredibly sore, which was the start of calcinosis and made handling most items hard work. Using a computer, writing, working zips and shirt buttons became a real challenge.
At this time we were running our own successful Pub Restaurant. Although demanding we put my fatigue down to the hard work that running your own business entails, it was in fact the start of G.A.V.E. and Primary Biliary Cirrhosis. We sold our business in 2003.
The PBC was identified by an M3 anti-body which is a marker for Limited Cutaneous Systemic Sclerosis, one of the side effects is itching.
It was in 2005 that my conditions started to surface when I met Dr. Daneshmend, a Gastroenterologist at the Royal Devon & Exeter Hospital (RD&E). I was diagnosed with G.A.V.E. (gastric, antral, vascular, ectasia) where blood vessels lining my stomach swell and weep, causing anemia, (sometimes referred to as 'watermelon stomach'). This condition restricts my diet, it presents itself as stomach cramps, stabbing pain and tiredness. My treatment started in 2006 with five treatments of Argon Beamer over 12 months. I was able to carry on working through the treatment.
By 2009 I was feeling tired and unable to keep up, so, I took early retirement from a well-paid retail managers position. I simply thought I was getting old and burnt out!
G.A.V.E presented itself again in 2010, and I had another round of treatment. By this time, I had been diagnosed with liver cirrhosis, my bile ducts do not process fats and cause diarrhea. At this point I met Dr. Batchelor a Dermatologist at RD&E. My fingers had become constantly ulcerated all the year round, following a blood test I was diagnosed with limited cutaneous systemic sclerosis.
At this point I met Dr. Haigh (Rheumatology) who has managed all my treatment in conjunction with Dr. Daneshmend, Dr. Ahmad (Gastroenterologist), Dr. Calvert and the nurses in nutritional support. I am grateful for all the help support and treatment I receive from the RD&E Doctors and nurses, and could not ask for anything more from the NHS.
This multisystem disease has affected me in a number of ways, arms below the elbow, legs and feet below the knee, P.B.C. and my face, resulting in loss of expression and difficulty in opening the mouth properly. Telangiectasia is also showing now quite prominently on my face, this is the breaking down of blood vessels and looks like red blotches. I also have Sjorgens syndrome, Calcinosis and Oesophageal involvment.
Because of the involvement of the heart and lungs, people with the condition are often short of breath. This effects me when climbing stairs and inclines. One of the overwhelming effects of this condition is tiredness, itching also can make life uncomfortable.
To complicate life further I have scleroderma attacking my bowels which has resulted in intestinal failure and as a result most of my nutritional needs are supplied through T.P.N, (Total Parenteral Nutrition)
I work part-time for Exeter University as a Porter and consider myself lucky, not only for a job but for their constant support and understanding from my colleagues. When I get home, I have an essential short rest, I try to nap rather than sleep as a deep sleep tends to disrupt my night sleep. Mid-afternoons are filled with light jobs around our home and in our garden, very much the light weight house husband, some days I need another short power nap to combat my fatigue.
When my wife Alison arrives home, we start with a cup of tea, (often the only hot beverage of the day for me, (decaffeinated). Water at room temperature or fifty, fifty boiled with cold tap water is my staple liquid intake.
Since the diagnosis of intestinal failure I had a Hickman line fitted in October 2016 which delivers the T.P.N. This is a major impact on both our lives. I have T.P.N every other night of the week ,which lasts from 7pm to 7am, I am totally independent of the hospital and clinical support team.
T.P.N provides me with the majority of my nutritional needs. I supplement my diet with very small and very limited regular food mostly fruit and veg with very small amounts of fish and chicken, low fat yogurt, soya yogurt, home made soups, sugar free jelly, unsalted crisps. Low residue is the order of the day mixed with trying to encourage some kind of normality
I also have Fresubins, a carbohydrate and protein drink, which with the help of Imodium prevent diarrhea and loss of weight. However if I'm not careful I can become constipated.
I take eight different medications regularly to treat my condition, Hydroxychloroquine Sulfate which reduces inflammation in people with autoimmune diseases, Sildenafil, Adalat Retard, Losartan to open blood vessels to increase circulation and keep my blood pressure down, Rabeprazole to reduce acid,Chlorphenamine as and when as I find it helps to control itching, three Antibiotics cyclically, Metronidazole, Augmentin and doxycycline, (over 6 weeks). I also have Iloprost infusions twice a year usually in March and October in hospital, 12 hours a day, for five days as this treatment dilates my blood vessels and improves my circulation.
Alison means everything to me, this devastating disease has not only affected me but has impacted on all aspects of Alison's life as well. She is a constant support, never complains and is always up beat.
We have the weekends off together and try and spend it with friends and family, who are constant source of support and happiness. I live for my wife, 2 sons, Ross and Matthew their wives Carlie and Bexy, and our precious grand daughter Amalie.
In the past I have always kept myself fit, enjoying a number of activities including swimming, going to the gym and walking. Today my conditions restrict me to light walking.
However our son Matthew ran the 2016 London Marathon, completed a twelve hour bike challenge. Raising in total £4000. Our son Ross organised a three peak challenge with the Royal Artillery and raised £1000. All for SRUK.
I am so proud of their achievements and humbled by peoples generosity. Raising money is so important as there is no government funding for this hard working worthy charity.