Rashmi Bhasin,48 suffers from a rare autoimmune condition called Scleroderma, as well as a host of other issues. It hasn’t been easy for her, but she doesn’t like ‘giving up’, which keeps her going through difficult times.
Who is Rashmi, the person
Rashmi as a person is very outgoing, loves travelling, meeting people, loves baking and cooking, is a movie buff and loves online shopping. Ready to do anything for anyone. Loves children. Loves animals.
Please tell us a bit about your condition
I am suffering from a number of issues: Systemic Scleroderma, Gastrointestinal (GI) issues,Arthritis, eyes problem, dry skin, fatigue, Sjogren’s syndrome, Addison’s syndrome and even from Pulmonary Arterial Hypertension (PAH).
What were the early symptoms of your condition?
Initially, it started with a lot of pain on my finger tips. The pain was excruciating and the doctors had no diagnosis to offer. My skin started getting hard and was itching very badly. My BP was very high and could not be brought under control despite medications. I saw many doctors in the 3 years before I was finally diagnosed. Infact, my family and even some doctors told me that I had mental health issues.
When were you diagnosed?
I was diagnosed in 2012
How did you cope with the diagnosis?
Honestly, when I was diagnosed I was at a complete loss. I had no clue about the condition and how to cope. I was at a loss for the initial years. I went through a lot of issues as I have had multiple flare ups. It took me a while to accept my condition.
Before you were diagnosed - what went on in your mind? What did the diagnosis do to your mental health? And what are the aspects of living with Scleroderma that affect your mental health?
Before my diagnosis I had plans to have children, have a family, was planning for an IVF. Scleroderma changed all this. Initially it was very disturbing, I cried for days. Acceptance came after a very long time. I went very weak initially but today I am a very strong individual who helps run a patient support group and teaches in another NGO.
Is there a history of Scleroderma or anything like it in your family?
My 2nd cousin suffers from Psoriasis and Sjogren’s syndrome.
Please describe your experience of managing the condition?
Initially it was very difficult, as information on Scleroderma is scarce. There was very little understanding of the disease. It was a difficult phase, I was running from doctor to doctor to understand what the problem was, I was going through a lot of tests , and money was flowing like water. I was perpetually at a doctor’s waiting room.
But once I settled down it made me a much stronger person. By the grace of God, finance is not an issue. So I am getting the best medical care.
What medications are you on?
I am on immunosuppressants, steroids, phosphodiesterase type 5 inhibitors. calcium channel blockers, antacids, pro-biotics, sleeping pills and Gabapentin.
Were there any side-effects of the medicines?
Yes, of course. All these come with a lot of side effects like mood swings, frequent bowel issues incontinence issues and water retention. I had gone through Cyclophosphamide cycles due to which I had sudden menopause at 41.
Did you suffer from co morbidities? If so, how did you handle those?
With Sjogren’s syndrome, my eyes have gotten affected and with Addison’s syndrome, my body is not making cortisol. But today I am managing all this with positivity.
What kind of specialists do you consult and how often?
Rheumatalogist mainly ,eye doctors ,cardiologist and skin doctor.
What were the other challenges you faced and what is your advice to patients who face similar challenges?
The main challenge was the time to diagnosis. Auto immune disorders generally take a long time for diagnosis as there is hardly any awareness even within the medical fraternity. I had undergone a skin biopsy where Scleroderma was mentioned. But a dermatologist was treating me without telling me I need to see a rheumatalogist.
After my diagnosis, people known to me started offering me advice about consulting a homeopath, or an ayurved doctor. .
My advice to other patients is please follow allopathy, see your doctor regularly, accept your condition, do not hesitate in sharing your issues . Stay positive and strong. It is a manageable condition in most cases with right medication, lifestyle changes and positive mind.
Have you learnt anything in managing your condition that you wish you knew before?
I just wish I was more strong and positive and more forthcoming in the initial years.
What are the least understood aspects of Scleroderma?
It is a manageable condition, it cannot be cured but managed. You can even get pregnant but with you should get guidance from a rheumatologist.
How has your illness affected your family life?
My family life has been affected to a certain extent, we couldn't have children. I have to plan my travels carefully and I also have to plan the meals we can eat.
Have you had to make some changes to your lifestyle because of your condition?
Yes I have changed my life 360 degree, I listen to my body. If I don't feel like doing something I don't, I eat sensibly and exercise is a must . I try to keep busy. I was working but now I can't. So I keep my self busy working with 2 NGO s.
I do yoga because it is a very good therapy, it helps in making lungs stronger and flexible.
Has it been difficult emotionally to cope with your condition?
Yes very, It has made me more irritable and more emotional .
Did you see a counselor for support? Were you offered counselling by doctor?
Yes I have seen a counselor not by doctor's advice but because I thought I needed help. People should not shy away from this aspect as mental health is as important as physical health.
What was the hardest part of the treatment? And what kept you going?
Treatment is always hard. My body is very sensitive to medicines and I develop the weirdest of side effects, like loose motions etc.
My family and my will power kept me going. My family has been very supportive. My family and my husband have been my pillars. I don't like giving up so that part helped me the most.
As told to Moyna Sen
