LE&RN recently welcomed the LE&RN India Chapter. Below is a message from Chapter Chair Arun Rekha. LE&RN India honored World Lymphedema Day at the AIIMS Surgical Conference in New Dehli on March 6. LE&RN Executive Director William Repicci joined them through a pre-recorded video message. Contact with Arun Rekha and the India Chapter can be made at this email address: IndiaChapter@LymphaticNetwork.org.
My first patient: an eighteen-year old girl from a fairly rich family had a big leg owing to primary lymphoedema, and an innocent yet an impalpable dream - to fit into a denim jean! She marked it as a symbol of ultimate independence - her only regret being that this disease deprived her of the sheer joy of walking in a pair of jeans!!
This was in the year 1992 when she came to me and due to my limited knowledge combined with lack of experience, there was little I could do for her and her dream remained unfulfilled. In fact, her situation went from bad to worse as her limb kept getting bigger - then we lost touch.
What doesn't break us, makes us stronger. My inability to help a girl fulfill her childish dreams motivated me to look beyond the limited information available in India and make good health available to all my patients. Today after struggling tirelessly for twenty-three years, my efforts feel validated when I see my young patients suffering from lymphedema getting back to wearing not only skinny jeans, but decent shoes to match too!!
The rest is history- but this history is no mystery as every struggle is imprinted on my mind and urges me to pen down my experiences and reach out to the world and urge them that with awareness and knowledge this disease is not just manageable but also treatable to a very large extent.
Going back to the beginning, in the year 1992 when the lymphedema clinic was added to my husband's running surgical center, I started only to provide assistance but along the way I found lymphedema therapy to be my true calling. While not a doctor myself, being married to one, I was drawn in by his passion, honesty and enthusiasm. My exposure to a large number and wide diversity of patients helped me hone my skills and develop an expertise in this field.
Of course, it was easier said than done. We were 2 individuals against millions of patients. Not only were we outnumbered, but also out-foxed as the the disease had spread its tentacles far and wide, with limited success with the conventional treatment methodology - infection control, LVA shunt surgery, and pneumatic compression. Thus, we were plunged deeper and deeper to look for treatment options beyond the conventional modes of therapy available, as the disease, like an insatiable giant, was engulfing people indiscriminately from all ages and walks of life.
The internet proved to be divine intervention eventually as it gave us knowledge and information about the compression modalities being followed across the globe, but there was an utter lack clarity on how to go about it. Where were we to even start looking for answers to a question that wasn’t even being addressed in India?
On realizing that I really wanted to do more to help my patients, learning about the treatment for lymphedema became my mission. I have always been one to accept the challenge that stares me in the face. We know what we are but we know not what we may be. So I took this mammoth task upon myself.
After a long and hard struggle, in the year 2007, one visit by Dr. Mary-Jo Geyer of Pittsburgh, School of Health and rehabilitation Sciences proved to be a Godsend opportunity. She came with a WHO project to create LO treatment clinics in India, with the shocking figure of 20 million suffering from Filariasis in India. I was fortunate enough to be invited to present a talk on treatment from Indian perspective. I stayed on to observe the course and class conducted by Nicole l. Stout. The insight provided by her class helped me observe the techniques and procedures to help my patients in a big way
However, I stayed in touch with Dr Geyer and in the year 2009, she suggested that I travel to USA and attend the full CDT class offered by Gunter Klose. I happily packed my bags and was reminded "Start doing the necessary, then do what is possible and suddenly you are doing the impossible”. This is how I found my path and I stayed on it, travelling to various European countries including Foldi clinics which kept enriching me with various experiences and deeper knowledge and expertise to find better and simplified solution for the patients. I tried to be a rainbow in their clouds.
Was it easy? Nope. Worth it? Absolutely. I was soon invited by the HOD Department of surgery at AIIMS to start a counselling clinic for lymphedema patients visiting OPD. My husband Dr. Gogia is an alumni of the institute and Filarial lymphoedema was his thesis subject. It was his dream to offer easy and simplified treatment to the patients. The last 25 years we struggled to make this dream into a reality and it gets a little easier every day.
Therefore, in spite of the constraints of the little affordability by the patients, lack of products and utter lack of privacy, I found a way to work around these issues and provide the best treatment I possible could. I met the patients after they had been screened by the treating surgeon, this way they had all the diagnostic and pre-treatment criteria fulfilled before I met them. I got funding agencies (Rotary etc) to sponsor bandages for them. I then went on to build a personal rapport with them by inquiring about their history and encouraging them to talk about their problems in detail to win over their confidence.
After that, I put them in groups to educate them about basic lymphatic system and link with their personal condition and stress upon following the components of CDT. However the treatment I provided was customized to the patient’s individual needs.