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Patient interview

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Q1. First, thank you for agreeing to this interview. I understand that you suffer from a rare disease. Could you tell me about it?

I have hemophilia. I prefer the term'have a disease' rather than'suffer from a disease'. Most rare diseases require life-long treatment and care. I think it more appropriate to say 'have a disease' because patients with any rare disease need to accept their disease and lead their life in a more positive way.

Q2. I heard hemophilia is classified as severe, moderate,ormild, depending on the symptoms. Which typedo you have?

Generally, severe hemophilia is diagnosed when coagulation factor activity is 1% or less. It is classed as moderate when it is 1-5%, and mild when it is 5% or higher. I have the severe form. With appropriate care, however, patients with severe hemophilia can live their day-to-day lives without problems.

Q3. I was told patients with severe hemophilia suffer a lot of pain. How is the pain (when you see hemophilia patients around you)?

Pain can be both physical and psychological. Also, the amount of pain felt by hemophilia patients will vary depending on whether they experienced poor treatment in the early 1990s.

I think that before the Korea Hemophilia Foundation was established, patients suffered physical pain more than psychological pain (it is not easy to express the degree of pain in words).

Since the KHF was established, patients have better access to coagulation factors. At present, Korea utilizes coagulation factors to the same extent as advanced countries. However, I think the level of psychological pain has not improved. I think that this is because patients feel depressed due to concerns about bleeding, which has a marked effect on their daily life. Patients need to receive psychological treatment and training to help them experience success, even when performing small daily activities.

Q4. I think that many patients with hemophilia have difficultyin living a normal life as the disease is life-long. What do hemophilia drugs mean to hemophilia patients?

As you say, it is very difficult to live a normal life without drugs. This is because patients with severe hemophilia, which has coagulation factor activity of 1% or below, are likely to suffer from spontaneous hemorrhage. On the other hand, patients with coagulation factor activity of over 1% suffer from spontaneous hemorrhage less frequently.

Prophylaxis therapy, which maintains the coagulation factor activity at 1% or above, was first introduced in some advanced countries, and now it is gradually becoming more common throughout the world. If this form of therapy becomes well established it will improve the lives of many hemophilia patients. Their physical condition will improve, as well as their ability to under take social activities;their lives will be more fulfilled. This is why drugs are so important to patients with rare diseases; they enable them to grow up as "normal" people and live their own lives.

Q5. I think you have knowledge of research institutes or companies studying hemophilia, as you have used hemophilia drugs as a patient. Do you want anything specific from them?

Currently, many domestic and foreign research institutes and companies are conducting research into various drugs to treat rare diseases, including hemophilia. I expect them to develop more advanced drugs by taking the time to understand the unmet needs of these patients.

In some sense, if hemophilia patients,such as myself, are involving in developing drugs, then these institution will gain a better understanding of our needs, and this will be reflected in the new drugs that are developed. For me, my disease will is a very important asset when I develop drugs. On the other hand, I am undergreat pressure as well. Recently,I met the father of a 4-year-old hemophilia patient. When he asked me to help create a world free from hemophilia before his son becomes a teenager, I felt pressure on the one hand but was filled with hope on the other.

Thank you.