Living The Dream - Nicola Whitehill

This year, 2016, FESCA (Federation of European Scleroderma Associations) have put together the following awareness / information video: ‘Hand in Hand for a Better Future’   To watch the video on YouTube, click : https://www.youtube.com/watch?v=wYIU7v50DfU To find out more about FESCA, visit their website as well…

DAY 22  Scleroderma Awareness Month: JOURNAL OF SCLERODERMA and RELATED DISORDERS 1 Week to go until World Scleroderma Day on the 29th June To celebrate the launch of the first edition of the new Journal of Scleroderma and Related Disorders and World Scleroderma Day, for the last week…

DAY 21  Scleroderma Awareness Month: UPPER Gastro-Intestinal Tract Scleroderma can affect the entire gastro-intestinal system starting from the mouth all the way down to the anus. Please see Day 11 SclerodermaAwareness Month for a general discussion of these symptoms — click here. Dry mouth, along with…

  DAY 20  Scleroderma Awareness Month:  BONES, JOINTS, MUSCLES Most scleroderma patients will experience symptoms relating to their musculoskeletal system, including their bones, and in some cases this can lead to osteoporosis. Again, it is important to note that no two scleroderma patients will present with the exact…

DAY 19  Scleroderma Awareness Month: CALCINOSIS Today’s topic is the debilitating, painful symptom of calcinosis. It is important to note that not every scleroderma patient will experience calcinosis, since no two scleroderma patients present with the exact same set of symptoms. Calcinosis is more prevalent in the diffuse…

DAY 18  Scleroderma Awareness Month: SKIN, HANDS, MOUTH, DENTAL I focussed on the Skin and its management for Day 10 Scleroderma Awareness Month also. To read the post, click here Today’s image, I have focussed on the physical effects which skin tightening and stiffness can cause.

DAY 17  Scleroderma Awareness Month: THE LUNGS As highlighted in the diagram above, lung involvement in scleroderma patients can be a life threatening complication, if not diagnosed and managed early on in the disease process. Lung involvement, compared to other organ involvement, currently, carries the highest threat to…

DAY 16  Scleroderma Awareness Month: THE HEART Scleroderma can affect all body parts, including the heart. This can be seen in the limited forms and the diffuse forms – see my Day 1 Scleroderma Awareness Month blog post. As can be seen in the above…

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…