Every child has the right to life saving health care, whether they have AID’s or cancer, but childhood cancer receives minimal funding. The key point is that this can be easily diagnosed when you know what are looking at and it is very curable with surgery alone when found early. So simple awareness can save children and their sight.
CHALLENGES OF RETINOBLASTOMA TREATMENT
Retinoblastoma (Rb) is a rare eye cancer of childhood. Tumours usually develop before the age of three years. 9000 children are affected worldwide. 90% of the children with eye cancer live in developing countries but, only 20% survive, where as 10% live in developed countries, where 96% are cured. Global retinoblastoma survival is less 20%. Children die from cancer that has spread beyond the eye due to delayed diagnosis and incomplete medical care.
In USA 250-300new cases are diagnosed every year, in UK 40-50 new cases are seen every year and in India more than 500 new cases are diagnosed every year. Worldwide there are 9000 cases of retinoblastoma distributed among the countries.
1. In older days eye cancer always required removal of the eye, just like cancer of any other organ. Nowadays this scenario has changed today if the child is brought early both eye and vision can be saved.
When should a parent seek early consultation with eye specialist?
2. This disease is hereditary in 25-30% of the cases. In hereditary retinoblastoma, tumor occurs in both eyes. In the past if patients had retinoblastoma in both eyes, both eyes had to be removed. Nowadays both eyes and vision can be saved with treatment. Or only the worse eye can be removed, saving the less involved eye. Hence genetic counseling is very important.
3. There is tendency in parents to hide this fact from their children forever. However all parents of children with hereditary retinoblastoma should inform them of this disease once they matured, so that they may seek early consultation and treatment if their children of the children. This check up should be done whether the patient has white reflex or no white reflex.
Challenges in developing countries
Our Department Work
The Retinoblastoma clinic has been running in the department since1999. It was initiated by Dr Usha Singh under the guidance of Prof Amod Gupta. The Clinic is the only center in north India treating retinoblastoma in a comprehensive manner and the final referral point for this region. Patients come from the states of Punjab, Haryana, HP, J & K, UP, Uttarakhand, Rajasthan, Chandigarh and Bihar. Some patients also come from far off states like Bengal and countries like Nepal. The treatment protocols of retinoblastoma has undergone paradigm shift with the advent of chemotherapy as a primary treatment followed by local therapy. Radiotherapy is used rarely and reserved for advanced disease. Currently many different treatment protocols are under study at specialized treatment centers world over. The Department provides state of art treatment facilities currently. The department has registered 566 cases till date.
Treatment of these patients extends over many months and need follow up for life long for adequate control of disease. Hence completion of treatment and regular timely follow up becomes the responsibility of the treating physician and parents of the affected child.
World Retinoblastoma Awareness Week.
World retinoblastoma week is being celebrated all over the world from 13th to 19th may 2012. With this regard, Department of ophthalmology is also participating in the above by holding a RB awareness day on 12th may, 2012.
Parents of the RB affected children will be called. Short survival stories will be told for the motivation of the parents. Message about Leucocoria or the white reflex will be given to the parents. Distribution of the posters and flyers will be done prior to the retinoblastoma awareness day. Distribution of flyers and posters will also be done in the nearby dispensaries so that there is more awareness regarding RB. Information will also be shared with the media and NGOs as well to spread the message about retinoblastoma