Message from the Chairman of the Support Group - Yusuf Ismail
17 August 2008
On Sunday, the 17th August 2008, saw the initial symposium of the Vitiligo Society of South Africaheld at the Albert Luthuli Hospital. The venue burst at its seams with an overwhelming response, to the extent that people had to be sent away due to lack of space. The society was initially launched in May 2008 at the annual congress of the Dermatological Society of South Africa. As a formation which will operate under the auspices of the Dermatology Society, its vital role will be to provide a support base for the number of individuals presently afflicted with Vitiligo.
At the aforesaid meeting, dermatologists addressed several important topics related to Vitiligo, including the cause of the condition, the psychological impact together with the latest treatment methods available. A cosmetic camouflage booth was also set up for patients to try on the latest applications. As a first for South Africa, the society will hopefully have more bargaining leverage with the stubborn medical aid societies. Sufferers can now address their concerns in one monolithic voice in requesting egalitarian treatment for all sufferers.
For too long, patients have been held at ransom by the establishment and ‘Big Pharma’ and now, perhaps, for the first time, decision makers and movers amongst the medical establishment could be invited to the various support group initiatives and experience first hand, the dilemmas, the concerns as well as the aspirations of patients who have been secluded for too long. The various remedies could also be complemented with developing ideas and the latest discoveries in the field of health care.
So what exactly is Vitiligo? Primarily associated with autoimmune and inflammatory diseases, it is a chronic non-life threatening ailment that causes loss to pigmentation resulting in irregular palepatches of skin at different intervals. Half of the people with vitiligo develop patches of depigmented skin before their 20’s. The patches may grow, shrink or remain constant. Whilst the causes of this are not precisely verifiable by science, what is clear is that stress is indeed a primary factor that affects the immune system, leading the body to overreact and start eliminating skin pigmentation.
One of the main problems affecting patients is psychological. In some obscurantist cultures, those thought to have the disease are considered to be afflicted with the evil spirit, need to be ostracized from the community and other such nonsensical beliefs. This may have had its origins in the dim past with the conundrum whereby people sought to conflate vitiligo with leprosy. Vitiligoappears to be as old as the recorded history of man, with references to it in ancient Egyptian, Greek and Chinese writings.
Today vitiligo is a TREATABLE CONDITION with the recent mapping of the human genome, paving the way for advanced genetic research into vitiligo.
Several strategies can assist a person in coping with vitiligo. Talking with other people, having a doctor who is knowledgeable and above all else support groups such as the present one are there to charter trajectories in dealing with the emotional and social issues and improving one’s self-esteem. We all need to be active participants in re-shaping and changing societies’ fears, phobias and misunderstandings in respect of vitiligo.
As Gandhi stated, “The future depends on what we do in the present.”