How will A Celebration of Life foundation help and benefit Neurofibromatosis patients?
A Neurofibromatosis patient requires long-term medical treatments. We have tumors throughout our body and nervous system which needs to be monitored every six months. When a tumor becomes life-threatening or disruptive, it has to be removed surgically. Some of the required treatments can be performed in Malaysia. But most of our surgeries require the attention of doctors with better judgment and skills. The most pressing need that NF patients in Malaysia lack is proper management of their conditions. This foundation shall assist patients in getting proper diagnosis and monitoring of their conditions by guiding them to experienced doctors familiar with NF.
The second most pressing problem an NF patient in Malaysia faces is financial. An NF surgery can cost anywhere between RM50,000 to RM200,000. On the average, an NF patient may require one surgery each year. Yet NF is considered a pre-existing condition which is not covered by insurance. Leaving with little choice, patients often delay or avoid treatments altogether due to their inability to pay which leads to their demise. This foundation shall assist NF patients financially by subsidizing the cost of their surgeries by 70%. Patients may apply for this assistance once every six months unless it is a medical emergency.