Living The Dream

DAY 15  Scleroderma Awareness Month: KIDNEY / RENAL Involvement Scleroderma can affect all parts of the body, and it is important to note that not every scleroderma patient will develop kidney related symptoms. Renal crisis occurs in 5% of patients, usually with the diffuse form, and usually, within…

Fatigue is a well known, chronic, debilitating and severe symptom to the autoimmune disease patient, and especially so with scleroderma. I blogged about fatigue in April, to read the article click here. Managing this symptom can be extremely challenging. Living with constant exhaustion and lethargy, severely…

  DAY 13  Scleroderma Awareness Month: Factor XII The Rheumatology clinical trials unit at The Royal Free Hospital in London are conducting a clinical trial to see if purified Factor XIII will be an effective treatment for scleroderma patients. Factor XIII is a component of the blood clotting…

DAY 12  Scleroderma Awareness Month: Nicola Whitehill Wehoo,….. as the image shows – today is my birthday, and how delighted I am, that I have made it to 43, 17 years post my initial medical prognosis expiry date. I am eternally grateful for the super…

DAY 11  Scleroderma Awareness Month: Gastro-Intestinal (GI) Involvement Many patients diagnosed with scleroderma have gastro-intestinal problems with a multitude of symptoms, as can be seen in the image (above). The entire GI system can be affected, starting at the mouth (dry mouth, difficulty swallowing, gum recession, etc.) all the…

    One of the major organs affected by Scleroderma is the thickening of the skin, as the name implies, Sclero, meaning thick, derma, meaning skin. This is usually the first tell-tale symptom to prompt a diagnosis. Skin involvement can vary depending on the type of scleroderma, with…

Day 9  Scleroderma Awareness Month – Digital Ulcer Management Today’s image shows the current NHS England management guidelines for The Best Practice of Digital Ulcer Management. I was honoured to be the ‘scleroderma patient expert’ member of the NHS England medical team who put these guidelines…

DAY 8  Scleroderma Awareness Month – RAYNAUD’S Treatment Guidelines Today’s post shows the management of Raynaud’s as advised by the UK Scleroderma Study Group at The Royal Free hospital in London.  Click here. I discussed…

DAY 7  Scleroderma Awareness Month Raynaud’s can be an initial symptom in the autoimmune patient (MS, Lupus, Fibromyalgia) and, which of course, includes scleroderma. It is important to emphasize that Raynaud’s can also present on its own, without any autoimmune involvement. The current understanding is that if a…

DAY 6  Scleroderma Awareness Month Over the decades, more has gradually become known and understood about scleroderma and the symptoms which it presents. Today’s post is a copy of the current guidelines which are accepted globally, when reaching a systemic sclerosis, scleroderma diagnosis. Due to the multi complex…