It has been 5 years since I found out the name of my condition. I spent several years in the U.S going from one doctor to the next, to surgeons and specialists trying to find out the cause of my birth defect/ leg malformation. I was desperate for help but the chronic pain never stopped. Depressed, alone, hopeless and suicidal. No one was able to help! The very first doctor I visited was a nightmare he knew nothing about my condition and in fact terrified of the way my right leg looked. There's nothing he could’ve done. The second, third, fourth… and onward were just as clueless as the first doctor. In disbelief, not one doctor was able to help; all of them were clueless about the syndrome. At that time, I became tired of hearing the doctors telling me over and over that there isn't anything they could do to help. Yet, suggested that I amputate the leg in order to eliminate the sufferings caused by the pains and circulatory complications (with no guaranteed).
I stopped going to my appointments and seeing new doctors completely, I didn't care to waste any more time. Nevertheless, I was drinking all sorts of different teas and oils, taking numerous pills as well as using several natural oils to massage my leg. There were times where I would be taking a shower and I would feel a sharp stabbing pain and consequentially feel weak, just to realize that I've been bleeding without any visible wounds. Two times within the same year, I’ve had terrible blood clot in which I had to be rushed to the hospital. I was given some medication that only placed me to sleep and was kept at the hospital for further treatments. However, no helpful treatments were giving because the doctors didn't know anything about my syndrome and what caused the blood-clots. Two days later, after being on bed rest, I was released with a follow-up note to see a new doctor. I started to follow up with that particular doctor on the regular. I gained a little hope and started to believe that I was going to get better. Mentally, I started to feel better. The doctor was not really doing anything but I believed and I was hopeful. Three weeks into seeing him for about 2-3 times weekly, the unexpected happened. An unbearable and uncontrollable pain striked. This time I thought that was it…my leg turned purple and my veins were popping. The following day, parts of my leg got very lumpy and my skin slowly began to soften. Two days later I had different open wounds with blood seeping through them. I prayed, and prayed for my pain to go away, but it never did.
The same doctor I trusted, one who gave me hope, one who made me believe that life would get better is the same one who sat in front of me, looked in my eyes and with great confidence, yet in deep regret broke the worst news to me….words that no one wants to ever hear, no matter how sick one could be. He said, "YOU WILL DIE BEFORE THE AGE OF 19". I remembered smiling because it was a hard pill to swallow. However, I believed in his words because he spoke so delicately, yet very deliberate. I left believing that I will die in three years’ time.