Our lovely customers are spread out around the globe, which always serves to remind me that there are people suffering from eczema all around the world. Today we hear from one of our amazingly brave mums in India, Anindita. Her story of how their family has united to help cope with their daughter’s eczema is heartbreaking but also incredibly inspirational.
This is our daughter’s story of her ongoing struggle with severe eczema over the past few years. We have survived some very tough and uncertain times especially in the last couple of years. However, in spite of all the trauma and pain we have faced, we have come through it all with the help of invaluable support from close family and friends and her doctors. Most importantly, our daughter’s spirit remains intact and whoever interacts with her cannot help but notice her positive outlook and her sunny smile. This is what keeps us going, especially me, since I spearhead our family’s efforts to bring her eczema under control with the help of my extremely supportive husband who is also a doting father to his darling daughter.
I have captured our entire journey from the beginning in details in my blog “eczema-anindianperspective.com” through various posts. Here I have encapsulated our story for Gail Palmer’s blog at her gracious invitation. I have been purchasing products for eczema on her website EverythingForEczema.com for some time now and have found it very useful to be able to find various products under one roof.
Our daughter Aiyana was born on the American Independence Day, 4th July, 2006 in Mumbai, India (where we reside) after a completely hassle free pregnancy. She was a happy, healthy baby and until she was 1 year old we did not have any inkling about how our lives would change forever because of eczema (Atopic Dermatitis) in the years to come.
In India at that time eczema was uncommon and awareness was very poor and even had I came across anyone with this skin condition, I wouldn’t have even realised it. When Aiyana was about 6 months old I had to get back to full time work. I weaned her off my milk and introduced cow’s milk as is the custom in India (again very few people had allergies to dairy or may not have even be aware whether they were allergic to dairy and dairy products). However, by the time she was one year old we realised that her skin was mostly rough all over and which never completely went away no matter how much we took care of her skin. Her pediatrician diagnosed her with Atopic Dermatitis and we took her to a dermatologist who confirmed the same. Thus started our journey with eczema.
How it all began
In the first few years till Aiyana was about 5 years, her eczema was mostly under control with moisturizers and minimal topical application. It all changed when we went to Rajasthan (a northern state in India) for a religious occasion in October 2011 for a few days. Since Rajasthan is mostly a desert with a very dry climate, her eczema worsened. However, even after we came back to a tropical climate like in Mumbai, her eczema did not let up and her skin condition went downhill from there in spite of all our efforts. When she reached a state of erythroderma (extreme shedding of skin with red exposed skin all over the body due to constant itching) in July 2012, we had no choice but start her on oral steroids (prednisolone). Aiyana was taken off the oral steroids and started on an immunosuppressive drug, cyclosporine which had a limited impact and once it was stopped in early 2013, she had be put back on oral steroids since her eczema was out of control. By this time we had tried various treatment options with varied success like Narrow band UVB, topical steroids and immunomodulators and were already following elaborate eczema safe skin care and bathing routines for her.
Our daughter’s struggle for survival
We decided to take her to see an experienced pediatric dermatologist at Great Ormond Street Hospital for Children in London during the summer of 2013. Since eczema is much more common in UK we hoped that experience of the doctors there would be able to help us control her eczema. However we soon came to realise that ultimately one has limited control of the outcomes in one’s life no matter how many precautions we take and all our planning. The dermatologist that we visited did all the requisite tests that need to be done before starting a patient on the immunosuppressive medication, Azathioprine, since one of the serious and sometimes life threatening side effects of this can be “bone marrow suppression” where the bone marrow simply shuts down and stops producing red and white blood cells. This is what we feared and is precisely what happened with our daughter though the medication was started only after her tests proved to be completely in the normal range. She was admitted to the Intensive Care Unit of a premiere hospital in Mumbai with a life threatening infection since her bone marrow had stopped producing white blood cells completely and could not fight any infection. However, our brave daughter fought back with the help of her doctors, the hospital staff and our family and friends who came and donated blood and platelets whenever required. After a nerve wracking 2 weeks she was finally declared to be out of danger. I have captured our experience and learning in my blog (“eczema-anindianperspective.com”) in the post – http://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/
This traumatic experience has brought our family closer and I can see in my daughter a strength and maturity much beyond her age and which helps her to cope with this condition on a daily basis. I find that I am inspired by my daughter to continue to look for a better way of controlling her eczema and help her lead a normal life.
Our life today
Today Aiyana is on the immunosuppressive medication Methotrexate after having been on another immunosuppressive medication, Cyclosporine and the oral steroid, Prednisolone (alternatively as well as together at times) to keep her eczema under control. In the past few years we have made radical changes in our lifestyle right from skin care and bathing routines to detergent free clothes and dish washing amongst others. We have tried various products like moisturisers, creams, therapeutic clothing which have helped to some extent but we are still far from bringing Aiyana’s eczema under control.
However, my role like any other mother is one of a never ending search for a better and healthier life for my children and my family. I have been doing a lot of research on the effects of diet and eczema and have only now come across one that I wanted to try on her by an Australian Nutritionist, Karen Fischer. I have started Aiyana on diet a couple of weeks back and we have a long way to go yet. This is where we are at the moment.
Be happy for this moment, this moment is your life
And in the end, this is what matters. How well we lived our life, how well we loved, how often we counted our blessings along the way; how well we learned to accept the things we simply cannot change and faced our most difficult moments. This is the lesson I strive to teach my children, one lesson that I am myself learning every day of my life.