Education and Empowerment Program for Patients
An innovative unique program for patients was organized by Dr. Danda and his team at
Christian Medical College, Vellore. It was a 2-day program held on December 15 and 16, 2017.
Around 250 patients and relatives of patients and 50 rheumatologists from various parts of the country attended the meet. The theme of the meet was Education for Self-care and Efforts for Empowerment. The meet had educative lectures by the faculty and interactive sessions with patients. Patients had their doubts cleared by experts. There were workshops on individual rheumatic diseases wherein the patients were taught about self-care and assessment of the disease. There were deliberations on how to monitor drug toxicity.
The program covered all important aspects that patients should know about diseases such as RA, SLE, SpA, systemic sclerosis, Sjogren’s syndrome, pediatric rheumatic diseases, crystal arthropathies, OA, myositis, osteoporosis, and vasculitis. In addition, patients were enlightened on the use of biologics.
A patient support group was formed at the end of the program. Overall, it was a good learning program for patients. It was a unique experience for rheumatologists who participated in the program. Dr. Danda and his team had made all arrangements for the successful conduct of the meet. Such meetings should be conducted across the country to enable patients to understand their diseases and available therapeutic modalities better. Also, such interactions with patients will improve rapport with them and hopefully encourage their participation in decision making for their better management.
Dr. Arul Rajamurugan, Rheumatologist, Madurai
My collection of dolls
I sort of remember one doll I played with as a child. She wore strange clothes, usually designed by the freak designer in me, some coarsely sewn from the discarded pile of garment cuttings in the tailor shop near home. She had long hair. which used to be neatly combed or in wild disarray depending on my mood. Her name was PooBalan. Poo in Tamil meant flower (not what you were thinking of!) and is the literal Sanskrit translation of my first name. So, perhaps then she was my alter-ego.
Now, fast forward, a good 3.5 decades, and I have another collection of dolls. These are quite different, and I come across them in my professional practice. A good number of them have systemic-onset juvenile idiopathic arthritis (SoJIA), previously known as Still’s disease, which started when they were toddlers. Some of them have other forms of JIA or other chronic rheumatological disorders. My good friend, a Pediatric Gastroenterologist, also has a few of these who were undetected with inflammatory bowel disease that started young.
It’s more than the illness. It’s a combination of the disease that remains uncontrolled and the problem with taking steroids every day since toddlerhood. Steroids alone do not control the disease and additionally through a negative feedback process inhibit the pituitary gland from producing the growth hormone (GH) required to grow tall.
My first doll came to meet me a few months after I had commenced practice here. Yes, she was considerably deformed by uncontrolled arthritis over many years, but she was 13 years and stood at 113 cm. Thankfully, she had not yet attained puberty, so I had a little time. With appropriate disease modifying antirheumatic drug (DMARD) therapy, she came off steroids, got her active joints injected to improve immediate functioning, and slowly she began to grow. Today, she has finished school and moved on to college; the disease is stable and she is on a single DMARD and, most importantly, she stands at 135 cm. Yes, she is a short adult, but in her situation, every centimeter counts.
She is just one of the collections that I have. There are boys and girls and they all share this common ground of having lost the capacity of vertical growth at a critical juncture in their lives. Some of them need expensive biological drugs to get their disease under control and it’s a constant struggle for both the family and me to keep finding the money for next month’s dose.
I wish that these children could be referred earlier so that we could start our attack and get the GH back in time for them to catch up with their peers. I wish that pediatric training emphasizes that there isn’t a single condition these days where we continue daily steroids for years and years – there are always options. It’s not the same as an adult RA patient remaining on 5/7.5 mg of daily steroids for ever and ever. I would leave my narrative incomplete if I didn’t mention the considerable harm done by longstanding alternative medicines that most of these children get subjected to as well.
I do wish that greater awareness could come about childhood chronic disorders, especially rheumatological disorders, so that NGOs and corporates would take up their cause. While childhood cancer and heart disease are very emotive issues at tugging heart strings and loosening the purse strings (and deservedly so), JIA or JSLE or childhood PAN seems to draw puzzled glances and unconvinced expressions. They are not even included in the governmental schemes for children with chronic disease such as the Thalolam scheme. It is amazing how just 1–2 lakh rupees can transform these kids’ lives.
An adult boy leaving school at 142 cm may not seem much, may have been bullied by his classmates, but he knows that he was 124 cm just a few years back and stuck there until tocilizumab and DMARDs helped him to kick off those nasty steroids that had dwarfed him so long. I wonder if he thinks about if he had had these medicines much earlier, his life would have been different?
Playing with a doll was fine as a child, but I wish I didn’t have to deal with this collection of dolls today. If only we could turn the clock back for them …
Dr. Suma Balan, Professor, Dept. of Rheumatology
Amrita institute of Medical Sciences, Kochi