Shine a light for health awareness

Islamabad

The month of May has been declared as Neurofibromatosis (NF) awareness month all over the world to foster hope in the NF community. NF causes tumours to grow on nerves throughout the body and thousands of men, women and children live with it in varied stages of progression.

Though there are quite a large number of cases of NF in Pakistan, not much is known about how the patients and families cope with the problem and if there are any support groups like there are elsewhere in the world. This is because we tend to hide anything out of the ordinary as far as health issues are concerned, as if it was the fault of the patient, or the family. Either people are ashamed, or shy, or fearful of being shunned by friends and neighbours. Health issues of certain kinds are no one’s fault and should be treated like any other illness. Of course ignorance and mistrust play a role in the way people think and an effort should be made to create awareness on this issue.

As a start it should be known that half of the people who develop NF1 or NF2 inherit it from a parent. The others develop it by chance, as the result of a spontaneous change in a specific gene in an egg or sperm cell. Every person affected by NF1 or NF2 has a 50% chance of passing the condition on to their offspring. At this time, there is no approved cure for NF but a number of promising NF clinical trials are under way. As researchers continually learn more about the underlying causes of NF and what makes tumors grow, they get closer to the development of effective treatments for NF.

In the US the Children’s Tumour Foundation (CTF) celebrates NF Awareness Month and World NF Awareness Day (May 17th) for lots of reasons: to put NF in the national (and international) limelight and to create wonderful fundraising opportunities for the innovative NF research supported by it.

‘Shine a Light on NF’ is a grassroots initiative used around the globe that brings NF awareness into the community by lighting up buildings, bridges and monuments in blue and green. (Like the example set by the Centaurus Mall for the Pink Ribbon Campaign for Breast Cancer). While there is not much hope that the government may step forward and join the campaign in Pakistan, it would be a great gesture if some NGO; Pharmaceutical Firm or any other company, or generous individual lit up a building in each city of Pakistan to create awareness about NF in the country. Not only would it be a blessing for those who are suffering from NF as well wishers realiae they need support, it would bring Pakistan at par with the many countries who are going to ‘shine a light’ on NF during the month of May. It will also demonstrate that we are not just about terrorism and negative news but we have the same hopes and aspirations of good health for everyone as do those who live elsewhere.