Premroop Alva, 42 lives with a rare hereditary blood disorder - Haemophilia condition. He has extensively worked towards spreading awareness and talks of the travails of the condition and how it should be tackled to lead as normal a life as possible.
Please tell us a bit about your condition
I am a person with Severe Hemophilia B (Factor IX deficiency). Haemophilia is a rare hereditary bleeding disorder. A person with Hemophilia(PwH) has longer clotting time than normal person. The absence of the clotting factor in blood causes Hemophilia. Factor-VIII (Hemophilia A) or Factor IX (hemophilia B) deficiency is seen in majority of patients 1 in 5,000 males suffer from hemophilia. Women are carriers, few of them are sufferers too. Untreated swelling/bleeds in joints/muscles leads to disability. Sometime it may lead to critical condition and death. Only medicine to treat any swelling or bleeding is replacement of missing clotting factor The medicines are very expensive, which is why 95% of our patients cannot afford treatment.
When were you diagnosed? What were the early symptoms?
I was diagnosed when I was nine months old. It all started with a small cut on my toe while my grand mother was cutting my toe nails. The bleeding did not stop, I was suspected to have a bleeding disorder which turned out to be Haemophilia.
I faced similar problems like others in the haemophilia community - bruises, blue patches across my body, some major bleeds, dental issues.
Is there a history of haemophilia in your family?
No. I am a case of mutation.
What is your present condition? Please describe your experience of managing haemophilia.
Because of repeated bleeds into certain joints I have disability in them. While I was growing up we did not have proper access to treatment. The only treatment then was whole blood transfusion, which had its complications.
At present I have enrolled myself into a clinical trail of a new medication that has an extended half-life. (factors stay in our body for a longer period)
Any related complications?
Orthopedic disabilities.
What were some of the challenges you faced and what is your advice to patients who face similar challenges? Have you learnt anything in managing in your condition that you wish you knew before?
Lack of awareness was the biggest challenge we faced. Those days we were asked not to exercise. We learnt later that physiotherapy/hydrotherapy should actually be an integral part of a person with Haemophilia. He or she should know self infusion, and take recourse to treatment at the earliest. They should believe in their dreams and Haemophilia should not be a hindrance in any way.
Patients are normally very open to any knowledge transfer. However, I have come across many parents who have not accepted and come to terms with the disorder. The first thing a parent or a partner needs to do is accept the disorder and know and understand the Do’s and Don’t’s.
Living with Haemophiliia can be managed very effectively
What kind of specialists do you consult and how often?
- Hematologist once in 3 months
- Dentist, when required
- Physiotherapist regularly
Have you had to make some changes to your lifestyle because of your condition?
All of us have to make certain life style changes. We need to be smart in what we do. We should avoid adventures sports, trekking and impact oriented stuff.
Please tell us your experience of working with other haemophilia patients?
My family joins me in the feeling that we need to give back to the haemophilia community. Supporting and developing the community and advocating for others suffering from haemophilia has been my life’s choice.
Why did you decide to take up the cause? How did you go about it?
When I was diagnosed with hemophilia there was no organization. I thought I was the only one. So I started advertising in news papers asking whether there are others who are also affected. A few responded and we started the Haemophilia Society Bangalore chapter 25 years back with 8 patients and 1 doctor. We have gone through the gamut of experiences, of seeing patients with no treatment to even expensive treatment to also free treatment in government hospital.
Now, we believe, there is no reason for our future generations to suffer from complications and disabilities the way we did.
We can even begin to believe our vision Haemophilia without disabilities and children to be free of pain.
We have certainly come a long way but have so much more to do.
What are your principal ways of reaching out to people suffering from haemophilia?
We are a very established organization, so all doctors lead the people suffering to us.
Has it been difficult emotionally to cope with your condition? What kept you going?
Sense of loneliness, and having to be careful, not playing …when other kids are playing is a part of our life. But the biggest element we have to deal with is pain and a whole lot of it. Its difficult for teachers and employers to understand - one day we are ok, as normal as any one else - the next day we have an internal bleed and miss out our school and work, lie in bed with a lot of pain, feeling helpless. Many haemophilia patients lose their jobs because of this.
Sheer determination to improve the haemophilia community keeps me going day in and day out.
How has your family supported you?
Family in most cases is the source of our strength. It is definitely in my case as well.
What was the hardest part of the treatment?
Cost of treatment. It can cost anywhere between Rs 3 lakhs to Rs 12 lakhs annually. After some time, its not about yourself. It is more about developing and working for the hemophilia community and ensuring that the future generation does not face the hardships that we have faced.
About Premroop Alva: Involvement/contribution towards haemophilia care in India:
- Played a critical role in successfully lobbying/advocating with the government of Karnataka to provide free medicines to haemophiliacs. Karnataka was the first state to provide free medicines.
- Architect and Concept Creator of the National Haemophilia Registry.
- Volunteered for clinical trials of latest medicines for welfare of haemophilia community
- Executive-member representing the youth in Haemophilia Federation India. Provided vocational training for the disabled. Conducts regular counseling sessions and assists haemophilic youths in personal, academic and career paths. Conducted First Job-fair for haemophilia in the world, where around 35 MNCs participated.
- Presently the Regional Council Chairman (south) with over 30 chapters
