Two Together Make Four!

I have been suffering from a condition of ‘weak bones’ since I was 3 years old. My first fracture occurred at the age of 3 years. I learnt later that my mother too had the same problem, which was called ‘osteogenesis imperfecta’. All through her life, she sustained 35–40 fractures and finally succumbed when she was 45 years old.

I spent my childhood in Rishikesh, where, I remember, during a camp I was prescribed medicines for 6 months.  I did take it then, but since I felt no betterment, I gave up any kind of medicines for the condition till I was 18 years old. I got married at the age of 19 years and gave birth to my son after a year when I was 20 years. Fractures have become a sort of routine of my life and I have learnt to live with them. Till date, I have had about 30 fractures, mostly over my hands and feet. They occur after trivial trauma or not even trauma, and I realize as I start getting pain over the area. And so, I have to be very careful to not to put any extra pressure over my bones in anything that I do. That makes it very difficult to go on with the routine of life. The worry for a fracture to occur becomes greater than that of the fracture itself.

As if this was not enough, I have been diagnosed with rheumatoid arthritis in 2003, although my ‘RA factor’ in the blood told I am  negative. I woke up one morning and suddenly found I could not make a fist without severe pain and stiffness. It started becoming a regular feature. At first, I wondered if they were multiple fractures, but X-rays of the hands did not show any fresh fractures and it was then that this ‘other disease’ was thought of and for confirmation of the same and treatment, I was referred to a tertiary hospital. That was the time (2003) I was first seen by a rheumatologist who started me on ‘Oncotrax’ and ‘HCQ’. I could take this combination only for about 2 years, when I was better with the arthritis part but then I could not tolerate it any longer and the very sight of the drug induced vomiting. I also had fever and in 2005, my treatment was shifted from this combination to another drug called ‘leflunomide’. I took this till 2007, with dose of 20 mg/day and then since I was fine, it was reduced to 10 mg daily with which my arthritis pain increased and so a dose of 20 mg/day and 10 mg another turned out to be optimum for me. These drugs had to be stopped briefly when I had some fluid in my lungs in 2004 and again in 2011 and I was told of some ‘patches’ on my lungs. I am also taking calcium and osteofos for my bone disease.

I have adjusted to my lifestyle with these two diseases. The white in my eyes, like my mother, is blue. Fortunately as of now, my son and my daughter are fine. It is my plea to the rheumatology community of our country to try and come out with research that can stop the passage of these diseases to your children and if not, ways of diagnosing them early and treatment that is more infrequent—like once a year or so rather than taking so many medicines on a daily basis for your life!

Thank you for the opportunity,
NS