Aakansha Khadiya is a fun loving foodie who loves trying out different cuisines, loves dancing and travelling and yet has to grapple with a condition which is not understood, is difficult to diagnose but affects the body in various ways.
Please tell us a bit about your condition
I am suffering from a number of autoimmune diseases namely Scleroderma, Raynaud’s Phenomenon, Sjogren’s Syndrome since the past 14 years.
When were you diagnosed?
I was diagnosed with Scleroderma at 17 just after I had finished with my Class 12th BoardExams.The symptoms of Raynaud’s had started showing when I was in Class 11th but we ignored them thinking it must be a regular infection as my mother’s side of the family has had basic skin issues, like acne or allergic breakouts. I got an ulcer on my finger which I ignored because my mom sometimes gets pus in her nails due to the use of excessive detergent (basically a fungal infection). We thought it to be the same and since it disappeared in a few days, we did not do anything much about it.
How did you cope with it?
Being diagnosed at such a young age was detrimental to my growth. There were a lot of changes that were going on in my body; there were days when I understood things and then there were days when I questioned God : Why Me?
The journey has been a roller coaster ride for me with 42 months of Dexamethasone Pulse Therapy which was a nightmarish experience, yet had its own plus points. It was a challenge every month to travel from Jaipur to Delhi every month, stay in hotels, and go through the same cycle of depression in the first week to allergies in the second, burnt skin in the third week which made me sleep on the floor with whatever comfortable cotton clothes were available and then by the 4th week, it made me better and my skin started showing great improvement and I carried on with this torture for some 42 months as it made me look normal. Pulse Therapy had made my skin free of the salt and pepper condition. All the spots were gone, I had clear skin, my hair had become silky/non curly, skin had become stretchable (could be pulled), mouth opening had increased and I was free of ulcers.
People who met me after I was done with the Pulse Therapy could not figure out that I had some kind of a disease and that made me happy.
My happiness was short lived.
After being in remission for almost 3 years, in 2018, I had started showing symptoms again. And since then it has been a crazier journey, from visits to Rheumatologists, Dermatologists, Pulmonologists, Ophthalmologists and what not, from one treatment interacting with another, from Lucknow to Delhi to Jaipur to Chennai to Bangalore, I have had multiple doctor visits and varied treatments, some right and some wrong ones.
What were some of the early symptoms of your condition?
Apart from the ulcers on my fingers which we ignored, it had become difficult for me to write while I was appearing for my Boards. My feet would become cold and numb as stone.I decided to go and see a doctor when one of my friends tried pulling my cheeks and she couldn’t and said that this didn’t feel normal.I still remember when the doctor saw me, he asked me to go out of the room as he wanted to speak with my parents alone and I was like I am brave enough to deal with whatever it is.
Little did I know, his discovery would change my life forever. He asked me to get my old pictures the next day and he compared my features and explained in depth about Scleroderma. I was told that if I survived 5 years, things will get better. But what I have learnt in all these years is that one can never be sure about what happens next in Scleroderma.
Is there a history of Scleroderma or anything like it in your family?
There has been no history of Scleroderma or any other auto immune disease in my family. Both my parents have Diabetes and High BP but I guess that’s more about just being lifestyle diseases.
Please describe your experience of managing the condition?
The journey has been tough, especially after being diagnosed the second time, but I try to take one day at a time and be happy. As my outer skin is largely involved with salt and pepper condition, Atopic Dermatitis, it has been difficult moving about in the outside world, as the world has a definite standard of beauty.I have had to quit my PSU bank officer job since it was a front office job and people made it extremely tough to be around. Customers had problems with me wearing gloves as they thought it wasn’t so cold and that it was hampering my speed.
But I have come a long way; just like the disease which involves thick skin, I am trying to become thick skinned to derogatory comments coming my way.
I try to be around people who understand me, and who make me happy.
What medications are you on?
Mofetyl S 360
Pilomax 5 mg
Tadact 40mg
Hisone 5mg
Bosentan 62.5
Itraconazole 100mg
Neurobion Alfa
Allegra 180mg
Pan D
Were there any side-effects of the medicines?
Yes, there have been side effects. Extreme hairfall is something that I am still trying to deal with. Frequent infections and allergies, nasal congestions are pretty common too.
Did you suffer from co morbidities? If so, how did you handle those?
As the disease progressed, so have my eye issues.I developed Keratoconus at the same time as Scleroderma which remained stable for a long time but after the 2nd time, Keratoconus increased too.I had to undergo C3R procedure in both eyes and Lipiflow treatment for dry eyes.I use Scleral contact lenses but since January 2022, I have been having trouble with that too as I have developed a form of Conjunctivitis common with Sjogren’s.
I have been on steroids for the eyes too since April 2022 and hopefully things will get better.
What were the other challenges you faced and what is your advice to patients who face similar challenges?
People will call you names, call you ugly, they will look down upon you but you must learn to give it back to them. It’s not your fault that you have Scleroderma, so you should not feel ashamed of yourself. Self Acceptance is the key to happiness.
For a long time, I considered myself to be God’s unique child , I felt unique and I was proud of myself and that made me clear college with flying colours, get a government job because I was confident about myself. There will be times when you will lose hope but seek support from people who love you and you’ll get back on your feet ready to fight the disease and the world.Look at yourself from the eyes of your loved ones and you’ll find yourself to be the prettiest person alive. As they rightly say, beauty lies in the eyes of the beholder.
Have you learnt anything in managing your condition that you wish you knew before?
I wish I had joined Support Groups earlier. Though I was connected on Facebook but never realized that the group was actually active.Joining the group led me to better doctors, which in turn helped me deal with a recurring skin issue for the past 3 years in just 3 months.It also made me realize that there is far more grief than I may be facing and that I should still be grateful for what I have or I don’t have.
What kind of specialists do you consult and how often?
I consult Rheumatologists, Pulmonologists, Ophthalmologists, Dermatologists once every 2-3 months.
How did you manage to handle multiple issues?
Prioritising has been the key, I prioritise issues based on severity of symptoms, and I also try not to miss my medicines and my doctor appointments.Even if I feel a small scratch in my throat, I make sure that I see a doctor because ignoring small things can lead to bigger complications very easily in a compromised immune system.
What are the least understood aspects of Scleroderma?
That it’s not just a disease that affects your outer body, but it also weakens the body from inside.
It’s not just a skin disease but is life threatening and the complications may be beyond control sometimes is non contagious and people have the right to live with dignity.
Have you had to make some changes to your lifestyle because of your condition?
I have had to shift my base from Jaipur to Bangalore as the weather in Jaipur made me sick all the time. I try to avoid spicy food, eat small portions at a time, eat healthy and make junk food at home rather than order from outside. I always sleep on the left side as it helps me deal with acid reflux to a great extent. Gravity works in your favour on your left side as stomach stays below your esophagus, making reflux more difficult.
Though I am not a trained dancer, but I have always loved dancing. I prefer zumba over all other forms of exercise.
Has it been difficult emotionally to cope with your condition?
Yes, it has been an emotional roller coaster and I hope to not give up.
My family has been my biggest blessing.
My mother makes sure that I eat good food, take all my medicines on time and has accompanied me to almost all my doctor visits for the last 14 years.My father, even at the age of 67 manages the house while we are gone for doctor visits and always motivates me to be positive.
My brother is an unconditional financial supporter who had given me a WFH job in his Start Up when I quit my PSU job and has taken care of a lot of expensive treatments and medicines.He always tells me to not worry about money. And lastly my husband, who I met in college while I was understanding Scleroderma, who loves me for me, my inner self and not my outer beauty. I may not be able to do a thousand normal things, yet he treats me as an equal in our relationship. He always tells me that had he been in my place, he would have given up and that I am his rock.
Did you see a counselor for support? Were you offered counselling by doctor?
Yes, I have taken counselling at varied points of time though I was never offered one by any doctor.
What was the hardest part of the treatment? And what kept you going?
My family is what keeps me going.
I live for my mom, dad, brother and husband.
The hardest part of this disease has been not being able to do normal things like cooking, tucking bedsheets or opening container lids or opening shirt buttons or using the keyboard as even the slightest hit on my fingers results into painful ulcers and my fingers have got deformed in shape making gripping difficult.
I also miss moving about freely in the world without being judged, doing household chores, wearing clothes I like and the most important one of not being able to carry or raise a child.
Have you ever thought about expanding your family?
Yes, I wish to expand my family but have been told that I have been through so much of treatment and steroids that it is not feasible to carry a child.
The options left are surrogacy (which needs a lot of money) and adoption (haven’t figured the option yet).
I would always need help managing the child , so a lot of money is needed there too.
So, a lot of consideration has to be put into deciding whether I can afford (financially and physically) a kid or not.
To all my fellow warriors,
Live life while you can!
Live in the present, don’t worry about the future!
As told to Moyna Sen
