5th SYSTEMIC SCLEROSIS WORLD CONGRESS 2018

The 5th Systemic Sclerosis World Congress was held in Bordeaux, France from February 15-17, 2018.

Our president, Marilyn Singer and committee member, Sandhra Sathurayar attended this congress.

You will find Sandhra's report below along with a collection of images from the congress.

A full report from Marilyn also appears in the May edition of "Outlook", quarterly newsletter of Scleroderma Association of NSW Inc.

Photo credits: Sandhra Sathurayar & 5th Systemic Sclerosis World Congress.

Marco Matucci Cerinic MD, PhD, FRCP, FBSRhon, Professor of Rheumatology and Medicine, University of Florence, Florence, Italy & Chairman of the World Scleroderma Foundation addressing the congress.

Our president, Marilyn Singer, arriving at the congress.

A non-sufferers view – Systemic Sclerosis

World Congress, Bordeaux 2018

 

I have been a volunteer with Scleroderma New South Wales for over a year. Besides supporting the Scleroderma community in New South Wales, the Association promotes and funds research into this affliction. However there is now a growing push by the Association to bring about an awareness of Systemic Sclerosis to the community in general. A great example being myself, prior to joining the Association I was totally ignorant of this condition.

 

I was fortunate to have attended the World Congress in Bordeaux this year. An excellent venue despite the cold and wet conditions. There were many great presentations by esteemed physicians and lecturers. Excellent presentations on heart and lung afflictions, Renal Crisis, Intestinal Tract problems, skin fibrosis, Raynaud’s Phenomenon, Calcinosis, Ischemic ulcers and specific medical recommendations on treatments for the above conditions. Most of these were way over my head being an ordinary layman with little or no medical knowledge, while some of which I was easily able to grasp.

 

However the Congress gave me a greater insight into how debilitating a condition this is, not only affecting the body physically but having an effect on the mind psychologically. It has also made me mindful of the need of patients to have psychological or psychiatric care as well.

 

Systemic Sclerosis or localised Scleroderma has a myriad of effects on the human body but more so on the orofacial region and I hope that the following report will bring about a greater awareness to sufferers and to the general community on the effects of Scleroderma especially on the orofacial region.

 

Our faces mirror what we are and the life changing impact Scleroderma has on the orofacial region which often drives sufferers to despair. My report is based on an excellent, easily understood presentation by Dr. Sophie Jung in association with the University of Strasbourg. Her presentation was based on the orofacial region (face).

 

The effects of Scleroderma on your face:

 

Lips: Reduced mouth opening “microstomia” retraction of the lips, protrusion of the teeth which can interfere with oral functions, prevents the maintenance of good oral hygiene and hampers adequate dental treatments. 

Preventative measures: Mouth stretching exercises making sure to hydrate your lips before starting. Self-massage, Kinesiotherapy or massage by a professional.

 

Tongue: Fibrosis, ulcers burning mouth syndrome exacerbated by reflux, medications etc.

Preventative measures: Treatment by qualified Medical professional.

 

Mouth: Fibrosis of salivary glands “decreased salivary production – dry mouth”, fibrosis of facial muscles placing pressure on facial bone surface. The appearance of dilated blood vessels on the surface of the skin or mucosa and fungal infections “candidiasis”.

Preventative measures: Drink small amounts of water regularly, avoid alcohol, coffee or spicy food. Chew sugar free chewing gums, sweets. Saliva substitutes are available, always consult with your qualified medical professional before use.

 

Teeth: Deterioration of supportive tooth tissue “periodontium”, periodontal ligament, receding gums leading to exposure of the root surface, also due to impaired oral hygiene leading to Gingivitis, periodontitis, inflammation of the gum tissue, loss of alveolar bone, loosening teeth eventually tooth loss. It should also be noted that certain medical treatments while treating the condition as a whole can have side effects.

Preventative measures: How can we combat these ailments? Always consult a qualified Medical Professional regularly, and the emphasis is on regularly, whether he/she is your dentist, rheumatologist or your family doctor. Try and maintain a healthy lifestyle, no to alcohol, drugs and tobacco. It should be noted that your dentist plays a crucial role in Systemic Scleroderma management. Maintain your oral hygiene, prevention is better than cure, procure condition friendly tools “soft toothbrushes, electric or sonic toothbrushes with smaller heads, fluoride toothpaste gentle on your teeth and gums. Use floss holders with wax coated fluoride floss for narrow spaces and interdental brushes for wider spaces. Air powered dental jet sends out air and micro droplets of water or mouth wash ideal for the removal of food debris and plaque between teeth.

 

It is my sincere wish that this report will help some sufferers and enlighten the general community of how Scleroderma can affect the orofacial region. If you do recognise these symptoms in friends, associates, or general public, please exercise compassion for these sufferers as I do.

 

I wish to reiterate that this is a report based on Dr. Sophie Jung’s presentation at the World Congress, Bordeaux 2018. Always consult your qualified Medical Professional.

 

My sincere thanks to:

Scleroderma New South Wales Committee for having made my attendance to the Bordeaux Congress possible. The excellent efforts of Jacinta Berle of Cruiseabout for making my journey to Bordeaux a stress free one. The excellent company of David Singer who not only made my attendance an enjoyable one but also for his dedication and networking skills for the Scleroderma cause as well.

 

Sandhra Sathurayar (Committee member)

Scleroderma New South Wales

The Congress offered opportunities for networking with organisations from countries all around the world. Valuable information on new developments in Scleroderma research and patient care were presented and the Singers even got to sing!

© 2015 Scleroderma Association of NSW Inc.  |   ABN: 94 989 217 688   |    CFN: 14819