The growing up years of Vinay Nair, 32, who has haemophilia, was largely marked with moderate or severe bleeding episodes. His mother, Indira, compliments her son’s positive attitude and steadfast determination that have helped him face his health challenges exceptionally well.
When Vinay was 6 months old, he started developing strange blue patches on his hands and legs, quite similar to the blue-black patches that appear when you have been bruised or pinched. These patches though small in size would fade away in a few days, but strangely new ones would appear. When I would gently rub my hands on them, he would flinch and cry loudly.
Finally, I took him to a doctor. A blood test was done and I was advised a visit to the haematologist. Vinay had tested positive for haemophilia. The blue-black patches where happening because of internal bleeding. The haematologist sounded more like a voice of doom. He said – “Be very careful about your child. Don’t ever let him fall. He is like a glass doll, he’ll break.”
We never took the doctor seriously. Vinay was an otherwise healthy child with no other complaints. There was nobody in the family who had haemophilia before. So, it was probably our lack of information that helped us keep calm and not get too ruffled. We kept thinking that with time he would outgrow the problem. Between the ages 1-7, there was nothing really untoward and unmanageable that happened, except for small, blue patches from time to time.
Haemophilia Muscle Bleeds
It was when Vinay turned 8, we realized for the first time how severe a haemophilia bleed could be. Vinay had a fall in school and the impact was on his thigh. His thigh muscle started bleeding. These are all internal bleeds. Muscle bleeds can cause a lot of blood loss inside your body. And as it presses against the nerve and blood vessels, it becomes excruciatingly painful and unbearable. His thigh was badly swollen and sore. We had immense problem getting him back home, because he would yell out in pain if anybody touched his leg or thigh. We didn’t know which position to hold or lift him. He had to be immediately put on a transfusion of cryoprecipitate (a blood-clotting factor), administered 2/3 sachets a day for several days.
He became an Inhibitor
When Vinay turned 9, a similar incidence required him to take the cryoprecipitate. But this time, his bleeding did not stop. We took him to the hospital and we realized that he had become an inhibitor. Inhibitors prevent or inhibits the clotting from working effectively. A person with inhibitors faces more bleeding and pain and poses one of the most difficult challenges of Hemophilia care. In patients with persistent inhibitors, if bleeding into the muscles and joints (the most common type of bleeding in haemophilia) is not controlled, permanent joint damage is likely, and in worst cases even morbidity.
Now, a high-dose clotting Factor concentrate had to be injected into the vein. Just to give you an idea, 1000 units of Factor cost about Rs 10,000. An adult needs about 2000 or more units for one bleeding episode. For a person with haemophilia, there is generally one or more moderate bleeding episode per month. And sometimes the bleeding can be major.
Schooling despite bleeds
Hemophilia bleeds need not always occur with an impact or fall. They can even be spontaneous bleeds when they are excited, anxious, scared. Vinay as a teen would bleed, for instance, before an exam, or a marriage function, or a picnic. There were many times, when I had to cancel an outing because he would start bleeding in his knees, ankles, elbows and shoulders. During these episodes, he would be in such pain that he would not be able to sit, stand, lie down or move his hands.
Vinay school life was heavily interrupted because of his bleeding. Sometime, he was able to attend school just for two months in a year. But he was a diligent child. He would collect notes from his older brother, Ajay, and friends and study at home mostly.
I remember, there were several setbacks during his final year school board exams. He had a major bleeding episode just before his finals and was in hospital for nearly a month. Six months later, when he reappeared, he was able to write three exams, but subsequently his palm started bleeding. His whole right hand palm had turned blue and was swollen. And he was not able to move it at all. But he was determined to finish his exam this time, so with the help of painkillers, slow writing and grit, he completed his papers.
Confident in College
I was extremely relieved that Vinay could pass his school, because with high absenteeism and frequent bleeding episodes, I was unsure whether he would be able to complete his studies. As soon Vinay got his pass certificate from school, he enrolled in college. College life changed him dramatically. He began to enjoy friends and freedom. He also became more confident of handling moderate bleeds himself.
After college Vinay joined an MBA program. When he completed his management studies, it was the happiest day of my life. I never thought my son would be able to study so much or handle the exertion and pressure. We celebrated his success by cutting a cake.
In 2015, Vinay got married to Swedha. He disclosed his hemophilic status to her before marriage, but she said it is alright. Today, Vinay is in a happy space. He has a 2-year-old daughter, Avika, some months back he had he secured a job at TCS as Senior Analyst. He has also tested Inhibitor Negative recently.
Vinay’s advice to other patients of haemophilia is:
- Physiotherapy is a must for every person with haemophilia because it keeps your joints and muscles in good condition.
- Remember – The race is not over because I have not won yet!
Haemophilia Tip
A good way to remember how to give first aid is the abbreviation RICE, which stands for
- Rest
- Ice
- Compression
- Elevation
Image: Vinay Nair in a light coloured shirt and black trousers with his wife Shweda in a red sari to his right and his mother Indira Nair in an ochre coloured sari to his left holding his daughter in a red dress
(Indira Nair, mother of Vinay, is the ex-president of Hemophilia Society Mumbai (Chapter). She is currently the coordinator of Hemophilia Federation (India), western region, providing psychosocial support to the women folks to fight depression, anxiety and fight for legal rights of people with haemophilia.)
