By Heba, Perthes disease, Egypt, February 24, 2021
It all started with a limp. A sudden limp changed the life of my active son and my life. My name is Heba and I am writing the story on behalf of my son Mohammad who was diagnosed with Perthes disease in his right hip at the age of seven. It is a rare childhood disease that affects 1 in every 20 000 children. It appears in the hip bones in one or both hips. It affects boys more than girls. A sudden unexplained interruption occurs in the blood supply to the hip bone and causes it to weaken and results in its fragmentation. The limp appears and the pain is so hard for a child to bear. In Perthes disease, the blood supply eventually comes back and the femoral bone rebuilds itself but it is different in shape than its original creation as to being round and smooth. This might cause leg length difference and arthritis later in life with a potential need for total hip replacement. Overnight, he was deprived of running, jumping and being a normal kid as before. I had to deal with a weak leg and a broken heart! We had a tough journey together trying to understand this rare disease that has no fixed treatment or medication. We consulted many doctors and they had different opinions and suggested various surgical interventions. Having a rare disease with no fixed tretment protocol is so perplexing! I was completely lost and the fact that I was taking the decision on behalf of a helpless 8- year- old child was devastating. Having no support in out country and very little information, I searched for Facebook international support groups. I looked for answers and finally he had an external fixation applied in his hip to save the degenerated bone. He stayed in his iron rods for 5 months then started physical therapy. I am grateful to Facebook support groups and to my good English that enabled me to search for answers and information. Having no similar support groups in Arabic, I started, with the help of other mothers, a support group for Arabic speaking parents. I wrote down my journey with my son and published it to be the first Arabic book talking about such a rare disease. I am also about to publish the book" Happy Crutches" in English to share our story with the world. Now, after a 5- year- journey, my son finished his Perthes days with a healthy hip and a sturdy will to help other Perthes kids get out of the tunnel.