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Submitted by PatientsEngage on 14 May 2019
A stock pic of a face with the butterfly shaped rash typical of Lupus

Dr. Chethana Dharmapalaiah, Rheumatologist at Aster CMI, Bengaluru shares her experiences on sharing a Lupus diagnosis with her patients, the stories of hope amidst all the despair. 

I have been practising as a rheumatologist since more than a decade. I was barely exposed to a handful of patients with rheumatoid arthritis and an even lesser number of patients with lupus during my undergraduate training. No doubt the awareness has increased now amongst doctors across specialties and the general public about autoimmune diseases. Now we are recognising these diseases early and diagnosing more number of cases. The incidence of auto immune conditions is certainly on the rise. This certainly is due to exposure to environmental factors. The healthy balance between the environment and the human body is lost, leading to a possible system breakdown.

As a rheumatologist, it is never an easy task to give a diagnosis of a chronic illness. 

Given the limited training in managing patients with auto immune diseases, it can be even more challenging to break the news that someone has an autoimmune disease which possibly will last their lifetime. 

Lupus is one such disease that commonly presents with symptoms of rashes, joint pains, mouth ulcers and fatigue. If the symptoms last more than a month or six weeks, it should prompt physicians about the possibility of an auto immune condition like lupus. This is the mild end of the spectrum. What patients worry the most and rightly so is kidney disease and dialysis. Surely not all patients end up on dialysis or need a transplant. A lot of patients do well with regular treatment. 

Accepting a Lupus Diagnosis

It is hard for anyone to accept a diagnosis of a chronic illness like lupus in one visit. It takes time. It is a long journey. Most patients would not have heard of it. Some patients who know a little about it are in total denial. Most patients are shocked and in disbelief – “why me”? Some patients are actually quite relieved that they finally have a diagnosis and there will be an end to the misery of doctor shopping. It takes many visits with the rheumatologist for a counselling about the diagnosis and its management. A long time is spent on coming to terms with the diagnosis, understanding that there is no cure for it and treatment is long term. 

Patients especially young women and their families worry about marriage, issues around pregnancy and childbirth. If married or just about to marry, patients often keep their spouses out of the loop too.  
Every follow up visit, we try to educate patients and their families a little more. They are given useful handouts on lupus to read and websites to visit to learn more and eventually to be in control of the disease. Awareness clearly improves compliance. It’s the unaware that mostly land in trouble. Stopping medications can cause a life threatening emergency like very low platelets, a kidney failure, seizures etc. 

There are a lot of happy stories to quote. I have been looking after a woman in her late thirties, diagnosed with lupus two years ago. The couple had been married for ten years and were having difficulty conceiving. IVF treatment had failed. She had vague symptoms of fatigue, mild arthalgia and anemia for years before the diagnosis of Lupus was made. Once we started on Lupus treatment, she felt better and conceived too. When they came for the first follow up visit post delivery, they clicked pictures and couldn’t be happier for having had a diagnosis and treatment, and now becoming a family of three.

Managing Lupus Effectively

Unfortunately disasters do happen, some preventable, some inevitable. It is not all happily everafter. Lupus is a waxing and waning condition. Most patients get very good at recognising a flare up early and seek quick help. The feeling of isolation and loneliness creeps up every now and then, especially during flare ups.  Exercising, being in control of their mind with meditation, yoga, etc helps them to warrior on. 

Their challenges are difficult to be understood by everyone. There are very few rheumatologists in India and often very busy to offer a lot of support. Patient support groups can help Lupus patients find support from others with the same condition, and being involved and helping others with lupus should take away the feeling of isolation.

Join the Auto Immune Conditions Community

Understanding their illness and challenges they face, may make the disease less invisible. We invite patients to join us in meetings and conferences, to share their journey, their concerns and issues they face. We have discussed issues like insurance coverage, inclusion of rheumatological diseases in the universal health programs, price control on drugs etc. Several appeals have been made to government for making the pivotal monoclonal antibodies more affordable, so more and more patients can avail their benefits.

I do believe there is light at the end of the tunnel!

 

Dr. Chetana, Rheumatologist and passionate about Lupus

Dr. Chethana Dharmapalaiah, Rheumatologist at Aster CMI, Bengaluru

 

 

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