It was a nice Wednesday afternoon. Saw this young lady with Ankylosing Spondylitis.
Reminded me of the typical Indian #rheum story.
She had been having symptoms since last 5 years. She had consulted an orthopedic surgeon for the same. She was diagnosed to have Ankylosing Spondylitis & was started on Sulphasalazine. She was 27 years old & the parents were eager to get her married. They found a groom in her hometown (Uttar Pradesh). It was a typical Indian village.
The parents did not reveal anything about the illness, medicines to the groom. The lady had a tough time after marriage. She had to manage household work with all the pain; more so since she was in a rural Indian setup where the newlywed is supposed to take care of all the work. Taking medicines daily was a big problem as the illness was never declared.
There was another major problem for her. The marriage plan was never discussed with any Doctor & they had never consulted a Rheumatologist. She was not even sure whether Sulphasalazine was safe in pregnancy. Contraception is never in the hands of rural women in India & she was no exception.
As days passed, the pain started becoming unbearable for her & started showing up in day-to-day life. The in laws & the husband soon realised that something was amiss. Due to the workload & stress, she was soon on the bed. The in laws felt cheated & sent her back to her parents.
And that is how they reached me, with anxiety & stress clearly showing in their face. This was some 3 months back. She saw me again this week. Ankylosing Spondylitis was now controlled, backache significantly reduced.
The next was the big question- what to do next? Should she go back to her in laws? If yes, what are they to be told…This caught me unprepared. Apart from the medical management, they also wanted me to help them reach a decision. ‘You must be seeing so many patients with such a problem- you help us take a decision’ they quipped.
Ankylosing Spondylitis being a chronic ailment, this decision is a tricky one.
• She is prone to have ups & downs, down the line. Would her family accept the future pain/ regular medicines?
• One thought was to call her husband/ in laws & counsel them about the disease. However, I was wondering whether they would really come all the way to discuss about her ailment.
• The other thought was to ask her to carry on with her life, concentrate on her health for the time being rather than the stress of going back to the in-laws, working hard in a hostile environment.
• At her in-laws’, she would be under pressure with regards to pregnancy & may find it tough to manage it with Ankylosing Spondylitis presently.
This patient has really caught me unprepared on the decision front. I thought I should be asking the #rheum community to help me out reach a solution for her & guide her.
• What is the best possible solution for her right now?
• What should the parents do prior to marriage as in this case.
Please post your opinion & help me help this lady!