How Scleroderma Changed My Identity

Neetu, 42 was a software consultant before the onset of Scleroderma transformed her life and identity. She describes her lived experience with Scleroderma, her challenges and the lifestyle changes that work for her. She is now co-founder Scleroderma India. 

Please tell us a bit about your condition, when were you diagnosed, the early symptoms?

In Jan 2006, I saw my fingers turning blue in extreme cold, but I ignored them. And during the same year, I started having breathing issues, but did not think about it much as I have a family history of asthma. My doctor prescribed an inhaler and I went on with my life. Also, I had fingers swelling especially my thumbs, which I did not pay much attention at that time.

हिंदी में पढ़ें: स्क्लेरोडर्मा ने मेरी पहचान कैसे बदली

I shifted cities for a job in Nov 2006 and I started having dry cough daily. Immediately I started Homeopathic medicines for the same but the relief was short lived. I also started having stomach pain and indigestion issues. Went from doctor to doctor but even after an ultrasound I was told it’s normal gastric problem and nothing to worry about.

I then consulted senior doctors at Wockhardt Hospital Bangalore and after a long series of tests I was diagnosed with Bronchitis, for which medicines were given. Besides that, Acid Reflux was being diagnosed which was a new term for me. I was immediately put onto Acidity tablets and was advised a few lifestyle changes.

Breathing issues were still bothering a lot, so I shifted back to Delhi and under the supervision of my family doctor and with an Inhaler my condition stabilized. Another issue which was bothering me was constant weight gain. Even after a good exercise regime I was unable to lose weight. After a series of tests, I was diagnosed with Hypothyroidism. This was in 2008.

Starting in 2009, My family doctor observed Calcium deposits on my finger and asked me certain questions regarding Raynaud’s. I was still experiencing blue Fingers and puffiness in Joints and toes. I was again put on a few tests and the results showed that I have Scleroderma. 

Please describe your experience of managing Scleroderma

In March 2009, after getting my diagnosis, I was referred to a Specialist who after a series of other tests put me onto steroids with other medicines to manage my condition.

In between I had a part of my toe amputated because it started developing gangrene. After almost 2 years we realized that the disease progression is a lot and medicines are not able to give me much needed relief so I was referred to another specialist for Dexamethasone therapy with Cyclophosphamide (Pulse Therapy). During this time I was advised oxygen therapy for 1-2 hours daily.

For 1 Year, I was onto this therapy. But my lung complications increased and all of a sudden I would start feeling breathless, not only during climbing stairs but during inactive time too. A chest specialist put me onto medicines for Lung Improvement for 1 Year. During that time my Pulse Therapy was stopped. After 1 Year I got some relief and Pulse Therapy was restarted in May 2014. By this time, I was on oxygen support for 6-8 hours, at night.

This got over in June 2016 and I was on Oral Endoxan for a year or so. The condition was manageable. In November 2017, i started feeling breathless again and consulted a Rheumatologist who diagnosed me with PAH and my PAH journey started from there.

In June 2018, suddenly I was not able to breathe and started feeling restless and I was put on 24*7 oxygen support, with complete bed rest.

The journey since then has had its ups and downs and in September 2019, i am still in the same condition, But the spirit to fight with this 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.

How did the symptoms and challenges of Scleroderma affect your lifestyle, work life, personal choices?

1. The first challenge which I face on a daily basis is - I have to be healthy enough to take care of my health since there are so many complex issues which can arise related to muscular / body pains, nerve pains, blood circulation issues leading to pain and gangrene in extreme cases, Gastro intestinal issues, breathlessness because of lung complications, heart palpitations due to pressure on heart to name a few, which is a full time job in itself.
2. I can't do any heavy work, can’t work for more than 30 minutes at max like cooking in the kitchen. I used to cook, invite and entertain, go out, drive, all of which have stopped. Walking few steps is painful, even with carrying oxygen, which simply means, I need help for managing my daily life too now.
3. Another challenge that I have faced is regarding work life. When I was diagnosed, I was working full time. Over the period of 10 years, I have worked on and off for a few years, making health my priority. Now, I work a few hours every day for the support group which I am heading.
4. it’s difficult to take care of family when you yourself need lots of support from people around you.

Has it been difficult emotionally to cope with your condition?

Emotionally it has been a roller coaster journey. Living with scleroderma robs you from doing simple activities like cooking, driving on your own, social life since you can’t move out or invite as you used to do earlier, and most importantly when you can’t work anymore.

I have had bouts of loneliness, depression, anxiety and self-worth issues especially after leaving my job 1 year back. It seemed like I have lost my identity altogether.

Social stigma is another factor which used to stress me out initially since your looks change, your personality changes; you are not as active as you were earlier. Also, being single in a society like India, mostly for health reasons, adds another dimension to it,

But slowly and steadily you have to pick threads and move forward. Also, this mission for my Support Group gives me motivation.

Is there a history of Scleroderma or any other autoimmune condition in your family?

None of my family members have Scleroderma. But my mother has hypothyroid condition.

Did you make some changes to your lifestyle because of your condition? How has this changed your life perspectives and ambitions?

The lifestyle changes are important if you have a chronic autoimmune disease:-

1. I made exercises/yoga my best friend. Unless I cannot get up from bed, I make sure that I exercise 4-5 days a week.
2. I take rests in between my chores so that I am not breathless and my heart rate does not increase.
3. I don’t walk much; take the help of wheelchair when I am visiting hospitals.
4. Eat mostly home cooked traditional food.
5. Eat small meals at frequent intervals, only 1-2 cups of tea a day, don't eat 2-3 hours before bed.
6. Sleep at the same time every day and try not to be hooked to TV/Laptop/Phone after a cutoff time at night.
7. Appreciate the small things in life.
8. I take one day at a time and don’t fret about the future unnecessarily.
9. My looks, my puffiness in body don’t bother me anymore. If I am going out, based on the day’s energy level, I dress up well which gives lots of confidence.
10. Unnecessary stares about my relationship status don’t bother me now.

What kind of specialists do you consult and how often? Are there challenges associated with working with multiple specialists? What resources do you use to help you manage the condition?

I consult these specialists:-

1. General Practitioner - To help me with day to day issues, arising out of management of multiple conditions.
2. Rheumatologist: - He is my primary doctor who manages and takes charge of my condition; visit is usually after 2-3 months.
3. Pulmonologist: - After being diagnosed with ILD (Interstitial Lung disease), he is my second specialist and visit is usually after few months.
4. Cardiologist: - After being diagnosed with PAH (Pulmonary Arterial Hypertension), he is my next specialist and visit is usually after few months.
5. Vascular Surgeon: - Decreased blood flow results in finger ulcers which require a vascular specialist to manage them. Visit is need based.
6. Physiotherapist: - Extreme pain in body parts, if not manageable by self with exercises, has to be managed by Physiotherapist, on a need basis.

Working with multiple specialists is challenging as all of them should be on the same page as far as treatment plan is concerned and all of them should have only one aim, to make patient’s quality of life better by any way possible, instead of considering patient as only a research project.

What were some of the common challenges patients faced and what is your advice to patients who face these challenges?

The common challenges faced by patients are:-

• The lack of awareness about the disease among the general public and medical practitioners too.
• Few years back, there was no support group available in India. Patients felt lost in the absence of company to talk about the disease and get guidance.
• Every patient is different from each other; you might not find a patient with similar symptoms and at same stage. So, it becomes a challenge to find friends in the support group.
• The concern about the management of disease on hearing that it’s a lifelong disease and treatment has to be on till the time you are there.
• The cost of treatment is another concern for the patients.
• The social stigma attached with the disease as it comes with physical changes on face and other body parts which are visible.
• The complications of this disease often leads to anxiety and depression, which makes the treatment difficult as healthy mind leads to a healthy body and people who are mentally healthy show good results in treatment.
• Being in a relationship with a significant other is a challenge in itself since your partner has to take an active role in your wellbeing, physically and mentally.
• Getting Pregnant can be a challenge, though medically it’s not impossible, as patient has to be off the medicines for a certain period while trying to b pregnant.

How has your family supported you? How did your friends treat you?

By God’s Grace, my family is quite supportive, starting from the diagnosis, till date. Earlier it was difficult for them to understand why I am missing family gatherings and why i don’t come out of the room and greet people at times. Gradually they tried to pick up threads and started understanding the uncertainty of this disease.

They might not exactly understand the complications, but seeing me in medical emergencies and in extreme pain, they try to support in every possible manner. In the past 10 Years they have given me enough support, strength and resources to fight this disease and it's only because of them I am able to start a Support Group to help patients across India.

Not much of my friends know about my exact medical condition. few know that i have severe lung complications due to which i am at home mostly, And only a couple of them know my exact state, they are the ones with whom i look forward to speak and spend time together. Ever since i am on 24*7 oxygen support and restricted movement, they are the light of sunshine in my restricted movement life since they take out time to come visit me and don’t mind driving from more than an hour on one side to make me smile.

Listen to Neetu in our webinars on

Body Image, Self Esteem and Rheumatic Conditions

Impact of Rheumatic Disease on Women

I am 42 years old, co-founder of Scleroderma India. I am an MBA by Qualification, and a Software Consultant with around 13 Years of Experience. I have worked in Corporate Sector as well as Startups in various capacities. Being a Scleroderma Patient since past 10 years, brought me closer to the plight of Scleroderma Patients and the lack of awareness of this disease in India prompted me to start this Not-for-Profit Trust/Society with fellow member, a few years back.

Updated on 25th October 2022

It is with deep regret that we wish to inform our readers that Neetu Wadhwa passed away this month. 

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