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Interview

Journey of a person with Hemophilia from scaling Seven Summits to raising awareness (interview)

Kulchand Phombo

Kulchand Phombo

 |  Kathmandu

Hemophilia is a genetic medical condition that impairs the human body’s ability to properly clot blood. Approximately there are 400,000 patients with Hemophilia around the globe and Nepal does not remain unaffected by it. The number of Hemophilia patients is gradually increasing in the Himalayan nation, too. Research has shown that one child in every 10,000 is born with this medical condition and dies before reaching 10 if she/he doesn’t have access to medication. Against this backdrop Nepalkhabar talked to Chris Bombardier, the Executive Director of Save One Life, during his short visit to Nepal. Chris has Hemophilia medical condition B. Excerpts:

First of all, could you please introduce yourself?
My name is Chris Bombardier. I'm the Executive Director of an organization, Save One Life, and I also have a medical condition called severe Hemophilia B.

When did you first come to visit Nepal? 
My first trip to Nepal was in 2017, and it was to climb Mount Everest, which was exciting.

That's great. Is this your second trip to Nepal? 
Yeah, this is my second trip to Nepal.

When did you know that you had Hemophilia medical condition? 
Yeah, I was diagnosed with Hemophilia when I was born. I had a family history of this condition, so my mother had two uncles with the condition, and it's genetic, so it's passed down from parents to kids, and it primarily affects boys. So when I was born, my mom knew that I should be tested and I was bound to have Hemophilia. I do have an older brother who does not have Hemophilia.

How supportive are your family and your friends for you after being diagnosed with Hemophilia?
My family has been wonderful supporting me with my Hemophilia. As far as my friends, I didn't really tell them when I was younger. I kind of didn't want them to know about my condition because I didn't want them to think of me differently or treat me differently. So I would guess you would say ashamed of having the condition. It wasn't until I got older that I realized that it was just a part of who I was and that I shouldn't be ashamed of that.

How old were you when you disclosed your medical condition? 
Yeah, I disclosed it when I was like, eight or nine years old the first time to some friends, and I felt like they treated me differently. So then I never did it again until I was in university and I was living away from home. That was the first time I started being more open about my Hemophilia.

What sorts of mistreatments did you face after you started becoming more open about it?
Yeah, when I was young, it was harder to hide that I had a medical condition because I would get injured and have to use crutches for a day or sit out of gym class. And so some people knew that there was something different about me, but then I would maybe come back the next day not using crutches, and they would call me and say I was faking being injured, or they would call me a bleeder. They were just kind of teasing me. And then some kids also felt like they couldn't play the same way with me because they thought I was kind of fragile and it didn't make me feel very good.

Of course, you didn’t feel good. How did you deal with it? 
I dealt with it when I was younger by just ignoring it. Not ignoring, but just not being as open about my condition. And then as I got older, I just became more confident about talking about it and making sure people knew that it didn't mean I was any less than them, that I could still be a normal person. And so it took me a while to gain that confidence in myself. And it wasn't really until I met other people with the same condition that helped give me that confidence and not feel so alone.

Do you still feel inferior?
No, I don't feel inferior anymore at all. I actually kind of look at my Hemophilia as a strength because I've had to endure a lot of challenges from that condition, a lot of pain, and I think it's made me more resilient and able to kind of overcome some challenges. I actually think it helps me a lot to climb Mount Everest, being able to be in uncomfortable situations for a long period of time. That's something I learned as a kid with Hemophilia. So I think it's really become a strength of mine, actually, and I'm proud of what I've been able to accomplish with my condition.

What are the signs and symptoms of Hemophilia? 
One of the main signs of Hemophilia is bleeding into joints, into your joint spaces. So knees, elbows, ankles are really common. And then you can also get easy bruising. So a lot of people think of Hemophilia as, like, you'll get a paper cut and you'll bleed forever. And while that's slightly true, that's not the whole story. It's really the internal bleeding that's most dangerous. So, for example, here in Nepal, where people haven't had equal access to treatment, they have repeated bleeding into maybe their knee. And after many of those episodes, it will become very swollen and won't bend anymore. So it becomes a really debilitating condition.

Well, it is not so easy to scale mountain peaks, let alone Mt Everest. How did you manage to scale them without sustaining any injuries? 
Yeah. In the United States and many other developed countries, we have access to medication that you can take. It's called prophylactic. So you're taking it on a regular schedule to help prevent bleeding. And so when I was climbing the mountains, I was just having to take my medicine while on the mountain, which was challenging in itself because you have to find a vein and do an intravenous infusion. So essentially sticking a needle into your vein was pretty challenging in the cold conditions on the mountain. And then just learning how to transport my medicine so that it didn't freeze was also challenging.

What was the aim of mountain climbing? What messages did you want to convey to the patients with Hemophilia around the globe?
Yeah, so I started climbing mountains because I've always been a very physically active person. That's a place that I get a lot of enjoyment. It's from climbing, and I had an opportunity to travel to Africa in 2011 and work on a Hemophilia treatment center there. That was my first international trip. And on that trip, I realized Mount Kilimanjaro was very close, and so I was like, I'm going to climb Mount Kilimanjaro. But on that trip, what was the more powerful? I climbed Kilimanjaro in 2011, and on that trip, I thought that the mountain would be a really life changing experience, but it was actually traveling to Kenya, to the hospital, and seeing what Hemophilia looked like without the same access to care that I've had. So while I was climbing Kilimanjaro, I had a lot of mixed emotions. I felt very proud of being able to climb it. I loved being on the mountain, but I also felt guilty that I was able to do the climb, and people living so closely to the mountain were just struggling to live with the same condition. And so I kind of dedicated. I decided that if I'm going to keep climbing mountains and achieve the dream of climbing the Seven Summits, which is the highest mountain on each continent that I wanted to do it for something bigger than just myself. And so I dedicated my life to climbing and bringing awareness to Hemophilia around the world, where people don't have access to care and hopefully trying to change that.

People with this medical condition can do any kinds of jobs including mountain climbing? Was it the message?
Yeah, when I was climbing, I think what I really wanted to convey to other people with Hemophilia is, you know, with good access to care, you can have big dreams and achieve them. I know that climbing mountains is not everybody's idea of fun. I mean, I think a lot of people would never think of climbing Mount Everest.  So, I think, a big part of my goal was to encourage people to think about equitable access to medical services around the world.

Did you visit patients with Hemophilia upon your arrival in Nepal? 
Yeah. When we came in 2017, before I climbed the mountain, we visited several patients with Hemophilia and it was a really powerful experience. We got to meet some of them again on this trip, which was wonderful to see them doing so well. But part of the reason, you know, we actually made a documentary about the climb of Everest. It was because everybody's heard of Mount Everest. It's the tallest mountain in the world. And I thought it was a really great opportunity to show that with proper access, you can climb a mountain, but the people living around the mountain in the same country don't have the same access. So I thought it was a really powerful message to show and to hopefully enlighten people in the United States and other places about this disparity in care around the world. 

What other mountain peaks have you climbed?  
I've climbed a lot of mountains, but the big ones are called the 7th Summit, so the highest mountain on each continent. That includes Kilimanjaro in Africa, Aconcagua in South America, Mount Elbrus in Europe, Denali in Alaska (North America), Carstensz Pyramid in Papua Indonesia (Australia-Asia continent). And then Mount Vinson in Antarctica.

What tips and advises do you offer to those patients with Hemophilia in Nepal? 
In Nepal, I think the message is that there is some medication available here, and it's really important whenever they're feeling bleeding happening to come and receive the medicine. I think sometimes there's a lot of difficulty to get to the hospital. And the expense to get here and they end up with a lot of damaged joints. So it's making sure you receive the treatment that you need as frequently as possible. But I also think that I want to encourage them to still have dreams and goals and not to think that because they have Hemophilia it means they can't reach those goals. It might mean that they have to change how they approach them but they're definitely still possible and it's amazing just since 2017 to today there's been a lot of change in this Hemophilia community here. They're very strong. They have a very wonderful organization that's making a big difference in patients ' lives and I'm excited to see that continues to grow because it's only been six years and it's a very profound change which is wonderful. 

If patients with Hemophilia have access to medication, they can survive. But a dose of Hemophilia medication costs a lot of money which a patient from a developing country like Nepal cannot afford. How long will donor countries be providing the medicine for free?  
Yeah, that's been one of my biggest worries actually. The people that are donating the medicine are actually the pharmaceutical companies that are making it. And it's been wonderful that they've made this commitment and have been donating this medication. But like you said, there's no guarantee that it lasts forever. But I think a lot of the responsibility on ensuring better access to treatment comes from organizations like Save One Life and some of the other global organizations to keep reminding these pharmaceutical companies that providing access to everybody is important, whether it's finding different ways to finance it or pay for it or providing discounts to countries like we need to always be working to make sure that that access to care never goes backwards. Because patients all over the world deserve this access to this care. Because with that access they get to lead normal lives. So, I think a lot of that responsibility lies on our whole entire global community to remain united in our voice and to keep advocating for that continued access to care.

What plans do you have in the upcoming days?
So in the upcoming days we're going to do a big celebration tomorrow for World Hemophilia Day, which is very exciting meeting with the whole bleeding disorder community here in Nepal. And then we're doing a screening of the documentary for the first time in Nepal in the afternoon. And then on Tuesday we're flying to Trek to Everest Base Camp. We have seven trekkers that are coming with me up to Everest Base Camp. All of the trekkers have been raising money to help support Save One Life and also our partners here in Nepal, which is amazing. So I'm excited to get to share the Kumbu Valley with these trekkers and see one of the most beautiful places I've ever seen in my life with more people, which is really cool. I'm very, very excited to share that experience with them.

It’s said that patients with Hemophilia suffer once or twice a month the most. Is it true? 
Oh, with bleeding? It can be even more frequently than that.  We visited a home yesterday that a young boy would have to come to the hospital three to four times a week for bleeding episodes, which is extremely difficult. Not only for the child suffering from those bleeding episodes, but also the parents that have to take off work to bring their child to the hospital for care as well. So it's extremely difficult, but I would say most people with Hemophilia would have to come at least a few times a month for treatment to treat bleeding.

Lastly, besides engaging in this organization Save One Life, what else do you do? 
This is my job. Yeah, I would save one life, which is great. Yeah, I love it. It's excellent and then I also have a new son at home. So being a parent is a new adventure for me. I live in Massachusetts now, but I'm from Colorado originally.  



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