Im writing this article on behalf of my mother Pushpa.
She was born and brought up in Kolkata.
She got married and moved to Nepal in 1986.
In 1989 after 2 pregnancies, she started showing symptoms of Raynauds in the cold weather of Nepal. Her nose started deviating and facial skin became taut. Japanese doctors who would visit Nepal occasionally pointed out that this could be Scleroderma and recommended that she consults at AIIMS, India.
My father would travel with my mother frequently leaving me and my sister behind( I was just a 2 year old). Sometimes she would travel alone from Nepal to India. This was the beginning of a new journey called life.
In 1989, Aiims diagnosed her scleroderma with an antibody and skin biopsy test. They also did a whole host of tests- PFT , esophagus tests etc.
They started her on Dexona pulse therapy and a few other drugs.
My parents moved to Bangalore because Nepal’s weather did not suit her. My father has been very supportive of her. Bangalore’s neutral weather really favoured her.
She continued treatment in india- consulted doctors all over in all these years- mumbai, bangalore, kolkata and Jaipur. Tried homeopathy, ayurveda and everything else.
In Bangalore she consulted at St Johns and Dr Dharmanand for the longest time. Whenever she is under stress or faces extreme cold she develops ulcers on her finger tips or toes/ ankle.
But over the years, she has learnt to manage these very well. She also has APLA, an autoimmune condition overlap that causes blood clots which leads to more ulcers. Treatment for APLA helps keep her ulcers under control.
She has been on steroids therapy since 1989 for every single day. She was never able to wean it off. Even though doctors really tried. Back in the days, steroid was the only treatment. This led to diabetes, early cataract and other side effects.
But shw enjoys going about her daily routine, enjoys cooking and is like any other 60 year old. She is a true warrior in our eyes.
She is under the treatment of Dr Dharmanand Bangalore and Dr Avinash Jain in Jaipur.
With modern day medicine and good doctors, the disease can be managed. My mother believes being active has really helped her. Incase of any small infection, whether it’s a cold or foot ulcer we are very proactive and careful in managing it in early stages. This really helps her deal with the situation better.
There have been a few ups and downs, but we shall all sail through well with a positive mindset.