My son, 20 years old recently have been diagnosed with two rare diseases NUTCRACKER SYNDROME and MALS SYNDROME (median arcuate ligament syndrome/ celiac artery compression syndrome/ Dunbar syndrome etc.)
He had always been incredibly active and participating in various sports like football, tennis, badminton, and athletics since his early childhood. Despite his occasional complaints of shortness of breath and mild chest pain, attributed to hunger or standing for long periods, neither we nor the doctors paid much attention to it because he seemed physically fit.
As he reached 16 years old, he began experiencing weight loss and some issues with his TMJ (temporomandibular joint), which they addressed with dietary changes and precautions. However, at 19, things took a more concerning turn. He noticed dark-colored urine after walking more than 3 to 4 kilometers, prompting visits to urologists and nephrologists. Despite numerous tests, everything appeared normal except for slightly abnormal RBC counts in urine. Further investigation leads to CT scan and it shows vascular compression disorders. So start consulting with surgeons and vascular specialists, and they advised to wait and observe before considering surgery. In the mean time, he struggled to stand or walk for extended periods due to the discomfort. He is trying meditation to find solace and strengthen his mind and soul while awaiting a clearer treatment plan from the doctors.
It is very difficult to see a well active child suffering from rare medical condition.
We have no idea what will happen in future, but definitely in present time we want to spend quality time with our son and cherishing every moment together. We are giving him confidence that he can do all things what a normal person can do but with little precautions.
Thus, my son’s journey continued, with hope for a solution to his ailment and the perseverance to endure the right treatment came along.
