Get-hooked June 9, 2020
How a diagnosis of scleroderma led Neetu Wadhwa to discover the warrior within her
A chronic disease, scleroderma in an invisible disability that affects the skin, lungs, heart, kidney and the gastrointestinal tract. In My Take, software consultant Neetu Wadhwa, who is a patient, talks about what led her to start Scleroderma India, a pan-India patient support and advocacy group for people with scleroderma.
It was in January 2006 when I saw my fingers turn blue in extreme cold. I ignored that but in the same year, I got bronchitis. I did not pay heed as I have a family history of asthma. My doctor prescribed an inhaler and I went on with my life.
I shifted cities later that year and developed a persistent dry cough. Homeopathic medicines gave short-term relief and I developed stomach-related issues as well. I was put on medication for acid reflux and bronchitis. Nothing helped and I shifted to Delhi where my condition stabilised.
Diagnosed after 3 years
However, symptoms persisted, and it was not until 2009 that I was able to get a diagnosis. I was diagnosed with scleroderma, with acid reflux and interstitial lung disease. This means my gastrointestinal track and lungs were compromised. In the initial years I was able to work full-time as an IT professional.
Gradually I lost all my strength and with chronic fatigue, I came into the category of Invisible Disability. Even taking care of myself is challenging. The progression of scleroderma did not stop, and Pulmonary Arterial Hypertension was added to the list of existing conditions in 2017. From July 2018 I had to be on oxygen support 24/7. I must take a wheelchair to walk more than eight to 10 steps. Unfortunately, scleroderma is not recognised as a disability in India, even if a person is on assistive devices.
Scleroderma India is a pan-India group
During this time, one understood my condition, except for doctors as it was rare. To bridge this gap between patients and doctors and spread awareness, I started Scleroderma India, a patient support/advocacy group with a fellow member in May 2015. Our group supports patients pan-India and counsels them on healthy management and offers emotional help. We conduct various educational workshops to create awareness among patients with expert doctors.
Every day is a new learning with any autoimmune disease. With scleroderma, uncertainty becomes a part of life. The common challenges faced by patients are:
- Finding friends in the support group as every patient is different from the other.
- Anxiety over disease management as its lifelong.
- Cost of treatment.
- Stigma attached to the disease as it comes with physical changes that are visible.
- Being in a relationship becomes hard as the partner must take an active role in your well-being.
- Having children is a challenge, though not impossible.
- Loss of strength, energy, and managing household activities can be challenging.
Since my diagnosis, my condition is the same but the spirit to fight with the disease is not yet over. I have started believing that what does not break you, makes you stronger in Life. I have also learned the importance of small things in life. We should not take things for granted in life like health and the love of people who are close to us.
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