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INDIRA NAIR

INDIA

My experience as a mother of PWH
It was a joyous moment when the nurse brought to me my second baby boy in Jan 1985. We were enjoying my son Vinay’s crawling period and I started noticing bruises on his ankle joints. When the doctor revealed that he is suffering from Hemophilia, I knew nothing about Hemophilia. Luckily, he didn’t have major problems till the age of seven.
When he was eight years old, he had a thigh muscle bleed and that was the time when I realized ‘What is Hemophilia’. Right from taking him downstairs and reaching the hospital which is approx 18 kms, was a real nightmare. During those days, he used to get the treatment with cryoprecipitate, later on we learnt about factor replacement therapy. Unfortunately, his tests showed Inhibitor Positive when he was eight. The frequency of his bleeding episodes increased.
I attended the Hemophilia Society Mumbai AGM in 1997 and became one of the Committee Members. I started gaining knowledge on Hemophilia through doctors, members and their families. Attending Psychosocial training at Delhi and Pune, helped me during my interactions with the Hemophiliacs in the hospital. I realized that apart from my child, there were many hemophiliacs and their families, who needed proper guidance and support. I got involved in writing minutes of meeting, making annual reports, arranging camps, World Hemophilia Day, AGM etc. The satisfaction that I got from doing all these activities, cannot be expressed in words. Gradually, I could serve HSMC as a Joint Secretary, Vice President and then President. Presently, I am the Chairperson of Women Group of HSMC and helping women to empower themselves. The women group meetings help to create a strong bond between the members and a lot of ideas get exchanged, which helps them. The thought of “Why this has happened to me” and the loneliness gradually disappears from their mind. I suggest that the women bleeders should come forward and share their experiences so that they get proper support.
Coming back to my son, he hardly attended his school from fifth to ninth standard due to frequent bleeds. Unfortunately, he lost his father at the age of 13 and the major responsibility of taking care of two sons, their studies, managing bleeding episodes of Vinay, managing finance, attending office etc was a great challenge. Luckily, we got good support from my sister-in-law who used to stay with us and took care of my children. The school/college authorities were kind enough to allow him to continue his education despite his absence. His friends too were good supporters whenever he had bleeding episodes. He graduated from college which was like a dream come true.
The most precious moment I cherish – As usual, on my return from office, Vinay handed over a letter to me and asked me to read it aloud. I just couldn’t read towards the end, as my eyes were full of tears, tears of joy, tears of contentment… I could not believe that my son had cleared MBA in Finance, and that too with a first class. He had expressed his gratitude to all of us for believing in him and for the support given by all of us. Vinay has a job, he is married, and is a proud father of a baby girl now.
It has been a long journey with ups and downs, it is really painful when your child is not able to attend school regularly or can’t go for outings or attend the functions due to bleeds. These trials made me stronger, self-reliant and confident.
My message to all Hemophiliacs and their family members….
“Amongst the darkest clouds, there is always a silver lining. Never Lose Hope, be Positive and Determined”.

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