Name: KT

Age: 57.

City and country: Orem, Utah, USA.

What type of haemophilia do you suffer from? Type A.

What is the severity of your condition: severe, moderate or mild? About 3 on a scale of 10.

Is there anyone else in your family who suffers from haemophilia? 1 brother and 3 cousins.

When were you diagnosed? In the mid 70s, I can’t remember the exact date.

How would you say having haemophilia has affected your daily life? To what extend do you think that having haemophilia has stopped you from having a life style that you would consider better?

I have to be cautious of cuts and bruising even as mild as I am. I have joint problems based on bleeding which make some basic tasks difficult. Other than some mobility issues, haemophilia hasn’t really stopped me from doing the things I want to do. I just suffer the consequences more.

Are you part of any support groups? If yes, what are your main activities and how does that help you?

I am connected with the local haemophilia society but I don’t engage with them very much.

Do you think haemophilia is on the media enough? Are associations doing a good job raising awareness on the condition?

I don’t believe that I have ever seen any awareness campaigns. Word is mostly spread through health providers who specialize in the disorder. Even my personal physician is a bit out of the loop. He relies on my knowledge when we discuss treatment. 

What treatment are you on now?

I take Cogenate (sp) as needed.

How would you evaluate your relationship with your physician(s)? Are you in close contact with them? Have they been your doctor(s) for a long time? How important it is for you to have a good relationship with them?

I have been involved with my personal physician and haematologist for many years. We have a very good working relationship.

How is your access to healthcare? Do you think you have enough support from the government of the US in any way?

I have good access but it is very expensive even with good health insurance. The government has no involvement but I do receive consideration from the Cogeniate (sp) providers which make it more affordable. 

Do you think that in the US there is sufficient investment in researching new treatments? Have you ever for example heard of new treatments that are being developed in other countries and you would like to have access to?

I haven’t heard of any new treatments that would be useful for my type and level of severity.

Do you think the research and pharma industry invest enough in research for haemophilia?

No.

Are you happy with the progress in the treatments for haemophilia? Do you see any improvements within the last few years?

There have been a number of improvements since the 70s. I hear rumours of genetic treatments in the works and think that that would be amazing.

What do you hope for yourself and others who have haemophilia? How do you see the future for haemophilia patients?

I would love to see an eradication of the disorder. I am very lucky with my severity. I have known a number of others who have suffered and perished due to haemophilia. I have hope for the future.