Living with a bleeding disorder during a pandemic, is one of the biggest challenge.
Athul was born with haemophilia, a rare genetic bleeding disorder in which the blood doesn’t clot properly. When I ask Athul about his experience dealing with his bleeding disorder in the past year, especially with the fear of catching covid, he tells me that he is currently in quarantine having caught covid.
When I ask him how he hopes to manage, he responds with a spirit higher than I’d imagine anyone in that position having, and says “just be more careful not to get hurt.”
17 April is observed as World Haemophilia Day, and in light of it, FIT speaks to haemophiliacs about what the pandemic has been like for them, and how their ‘blood brothers’ can better manage their bleeds when in isolation.
Haemophilia runs in Athul’s family, and so he was tested and diagnosed as an infant. His sister, Dr Anupama Pattiyeri, too, is a haemophiliac, but it would be a many more years before she was diagnosed.
Imagine you stub your toe, bang your knee against the bed post, or accidentally slice your finger while chopping vegetables.Now imagine your body can’t clot the bleeding. You need your medicine, you need medical assistance. But you’re alone, and there’s a pandemic going on outside.
This was the reality of many who live with haemophilia, back in April 2020.And it continues to be so in April 2021.
‘Be Careful, and Hope for the Best’
Speaking to FIT, Athul says this isn’t the first time he’s had to self-quarantine. He’s been through this a couple of times before.
“Normally I’ve had a friend get me my medicines or run errands for me, but now that I have tested positive, I’ll have to be a little more careful, because right now I can’t just go get help if I need,” he says.
“When you have corona, people will be afraid to come to you. It doesn’t matter how much money you have.”
Athul usually has a stock of his medicine, clotting factor concentrate (CFC), and an infusion kit ready to go.The trouble is that if his right hand gets hurt, self infusion can become tricky.
“At these times I would need my friend’s help. Right now, I’m just trying to protect my right arm till the quarantine period. I can’t afford to hurt it.”
Athul
R Sathyanarayanan, the secretary of the Chennai chapter of the Haemophilia Federation (India), who himself has severe haemophilia, also talks about the trouble the pandemic has posed for them.
“We requested the government to give us special permission cards that we could show at hospitals if we need emergency care during the pandemic,” he says.
Managing Haemophilia When You’re Alone
This time, Athul’s parents—who have also tested positive—are quarantining in the same house as him.But he talks of a previous COVID scare a few months ago when he wasn’t so fortunate, and had to spend weeks completely by himself, alone in a room.
“Most haemophiliacs are very dependant on others for help, but I think corona has taught us to be more self reliant,” he says.
Athul
When asked about how he managed his bleeds alone, in true millennial fashion, Athul answers, ‘with the help of the internet.’
“I would say Wi-Fi saved me,” he laughs. “ I had pain in my leg at that time. I checked out YouTube videos and also video-called a couple of doctors to find out about what I could do, and what exercises would help.”
“When we exercise, we should only do low weight, low intensity exercises with repetition,” explains Athul. “And always have an ice pack ready.”
R. Sathyanarayanan also emphasises on the importance of physical exercise and physiotherapy.
“Factor is not the only option of treatment. While Factor is crucial, there are also different forms of therapy that can help too, and it is up to us to be creative and figure out what helps us, especially when it comes to managing the pain,” he adds.
“The funny thing is that I barely ever need to use the medicine. But I always need to have it. Just knowing that the medicine is there in the fridge incase I need it is what gives me the confidence to go about my day.”
Athul
‘You can’t make others comfortable until you are comfortable.’
Sathyanarayanan has been dedicated for years now, to the cause of helping people with haemophilia and their caregivers understand and manage the condition to the best of their ability.
“One thing that haemophiliacs need to be very careful of are spontaneous bleeding episodes,” he says.
“When I go to bed at night, I might be normal. But sometimes, I end up waking up to swelling and bleeding in my joint. This happens without any apparent cause of injury.”
R. Sathyanarayanan, Secretary of Hemophila Federation (India), Chennai Chapter
When this happens icepack and crepe bandage can help control the swelling and bleeding. Of course there’s also CFCs.
But, how easily people with haemophilia are able to access these medicines depends entirely on the governments of their respective states.
Access to Medication
“Over the last few years, we have witnessed a revolution in terms of services available for haemophilia in our country especially through the public sector, says Dr Nita Radhakrishnan, Associate Professor and HOD, Department of Paediatric Haematology-Oncology at Super Speciality Paediatric Hospital, Noida.
“Patients can access free of cost clotting factor concentrates through medical colleges and district hospitals in most states of India.”
Dr Nita Radhakrishnan, Associate Professor and HOD, Department of Paediatric Haematology-Oncology at Super Specialty Paediatric Hospital, Noida.Athul and Dr Anupama also speak of the Kerala government’s Karunya Scheme that lets people with haemophilia get these life-saving medicines for free.
Dr. Anupama goes on to talk about how these medicines have been available to them throughout the pandemic, with some centres even willing to deliver to their homes.
“But this is just the beginning of a mammoth task ahead,” says Dr Radhakrishnan.
Sathyanarayanan agrees, saying that the haemophilia federation have not only been advocating for awareness and better treatment for haemophilics, but the uniform availability of these treatments for all, under the umbrella of, one country, one treatment. During the pandemic, Sathyanarayanan and his team have been to deliver medicines and kits to haemophilics around the city, and making them available in decentralised locations.
Mind over Matter
“90 percent of your bleeds come from your mind,” he adds, speaking of the impact that one’s mental state can have on the bleeds. “As soon as you realise you’re out of medicine, and that you don’t have any way to get the medicine in the current situation, your mind will start worrying about getting bleeds, and the bleeds automatically increase.”
Sathyanarayanan agrees, saying “until and unless you are mentally fit, you cannot be physically fit.”
“You have to motivate yourself, and force yourself to relax. If you feel overwhelmed, its best to call someone who can guide you through it.”
R. Sathyanarayanan, Secretary, Hemophilia Federation (India), Chennai chapter
Athul, too, speaks of how his mental state can trigger a bleed. “Whenever I have an exam, I will have a bleed or another because my mind will be in a flustered state.”
“Don’t let your mind be idle,” says Sathyanarayanan.
Where your anxiety and stress are high for whatever reason, he also advises taking some prophylactic factor.
“During those crucial times, if you have medicine at home, taking a very small dose of it as a profelactic can heally help give you a peace of mind.”
R. Sathyanarayanan, Secretary, Hemophilia Federation (India), Chennai chapter
Dr M B Agarwal, MD, President – Mumbai Haematology Group Prof & Head, Dept of Haematology, Consultant, Lilavati Hospital & Breach Candy Hospital, Mumbai, “Patients with severe haemophilia can use prophylaxis, to sustain enough clotting factor in their bloodstream to avoid future bleeds.”
“It helps in minimizing the risk of bleeding and delaying joint damage reduces,” he explains.
Alone, but Together
It isn’t just physical stress, living with haemophilia can take its toll on the soundest of minds, not to mention the minds of worried and overwhelmed parents.
This is also perhaps why the community is so close knit.
R Sathyanarayanan constantly refers to other haemophiliacs as his ‘blood brothers’, and how important it is for older experienced members to guide the younger ones.
He also talks about how in some ways the pandemic has been a blessing in disguise, ironically bringing their community closer together even as they maintained physical distance.
It took some time for people to get used to Zoom calls and virtual meetings, but once they did, it’s been really great. They constantly called each other, sometimes even while cooking in the kitchen, just to keep each other company.”
R. Sathyanarayanan, Secretary, Hemophilia Federation (India), Chennai chapter
Sathyanarayanan speaks of parents of haemophiliac children in particular who were virtually able to strengthen their support system during this pandemic.
“They would have Zoom meetings every Saturday evening and uprise the others of everything that happened during the week. They would share their concerns, their experiences and their advise.”
