Dr. Priyanshu Agarwal was affected by a chronic progressive genetic disorder, Charcot-Marie-Tooth Disease, that impacted his nervous system. The young doctor was born and raised in Kalapipal, a small town in Madhya Pradesh. did not know that he was affected by this genetic disorder.
The early symptom was experienced as an imbalance while walking and running during the days when he was preparing for medical entrance in Indore.
In medical school, the first year appeared normal for Dr. Agarwal. By the age of 22, he started experiencing some difficulties.
Due to this disease, the doctor's nervous system was severely impacted, primarily hearing.
He wasn't able to perform even simple tasks on his own, including tying his shoelaces and riding a bicycle, because of his lost gait. He wasn't able to properly connect this to medical terminologies, but he did understand that it has something to do with nerves, so he decided to see a neurologist.
The doctors suspected it to be a hereditary neuropathy. The condition worsened slowly and steadily, which impaired his motor skills during his internship.
As a medical student, Dr. Agrawal became curious to know what was happening to him and started exploring the biological reasons.
He checked on the internet and got information about various mutations and permutations of diseases and symptoms as much as he could.
This search finally led him to a condition called Charcot-Marie-Tooth disease (CMT).
Besides the diagnosis, he also found that he had the most severe type of the CMT variant i.e. Type X.
The treatment of CMT is symptomatic through physiotherapy, pain medications, and nutritional balance.
"The progression of this condition is extremely slow in some variants. Many will know only after 45 years of age when the symptoms will start becoming evident. Though this is a rare condition, it is one of the most common genetic disorders. While there is no cure available now, symptom management is possible through physiotherapy, pain medications, nutritional support, and surgical interventions for deformities."
Dr. Priyanshu Agarwal
The first treatment he tried was Tibetan therapy, but it didn't work. Then he began trying alternatives in homeopathy and ayurvedic medicines, but nothing worked again.
Dr. Agrawal took advice from his mentor, Dr. Prabhudeva Hiremath, a neurologist from Bengaluru.
Before seeking a medical diagnosis, anxiety about looking for treatment and worsening symptoms affected his academic performance, making his postgraduate entrance exam and clinical rounds extremely daunting.
Dr. Prabhudeva came like a god in my life. The kind of support he has given me is immense. He not only boosted my morale but also showed me the right direction, first a formal diagnosis to know the genetic version of CMT I had.
Dr. Priyanshu Agarwal
After extensive investigations, Dr. Agrawal was diagnosed with CMT type 4c, which is one of the least severe variants of CMT.
With the right diagnosis and the moral support of his mentor, Dr. Agrawal became a little less worried and more motivated to spread awareness about this disease. He decided to reach out to every state government and the central government to ensure that this condition gets attention among medical students and practitioners.
Dr. Agrawal shared his journey, from having 'no diagnosis' to having 'wrong diagnosis'.
Dr. Agrawal regretted that if his condition had been diagnosed earlier, it might not have progressed. He emphasized the crucial role of accurate diagnosis in healthcare. He aims to inspire others by sharing his personal story of battle with this disease.
He is still living with CMT, facing the challenges with resilience. He owes his effective management of the disease to the support of his friends and fellow doctors.
My only request to people who are facing CMT is to be mentally strong. There is medication coming your way. There is gene therapy which is showing progress on some of the variants of CMT. Also, a request to those who are around people with CMT: Give them the best possible physical and mental support.
Dr. Priyanshu Agarwal
He advocates for and spreads awareness about CMT and hopes to establish a robust network.
(Input from various sources)
(Rehash/Dr. Pragati Priya)
