Journal Entries from the NHF Conference in Orlando, October 2018

Journal Entry 10/12/18, 12:26 PM

I can’t believe that I’m finally here! The National Hemophilia Foundation (NHF) went above and beyond as usual. The only problem is which session to choose, because there is so much information and there is this feeling that you need to learn everything, to feel more empowered and in control of your life.

I was happily surprised to see that they are integrating mental health to the programs. I mean, you are so used to worrying about your kid, that it becomes part of your personality and of your daily life. You go on without noticing that you may be sad or perhaps depressed because of having to deal with this issue for so long.

This year, NHF included sessions on yoga, Tai Chi, strength exercises, and mental issues. You can’t help but notice the importance they are giving to the aspects of living a life with a chronic medical condition. It’s funny.  Even though I was also diagnosed with hemophilia a couple of years ago, my son is still my main focus when it comes to this, and when I was asked about his medication, I knew the name of the one he is using, the ones that he has used before, and the one that he wants to try in the future. However, when asked about my medications, I didn’t remember the name or dose, and had to call the HoG pharmacy to get the information.

Anyway, I will keep you posted, and thank you from the bottom of my life for this wonderful opportunity.

Journal Entry 10/12/18, 6:11 PM

Today was a day for reflection. Of stepping back and see the hemophilia community with new eyes, from a new perspective.

I have been noticing that at events like this, people talk to each other like long-time friends, perhaps because we belong to the same group. Because of speaking to others and learning their stories, we know how their life goes and the struggles they face sometimes on a daily basis. We all try to be happy and positive and in general live a normal life, but the difficult moments, the countless hours of worrying, leave a mark on a person, no? Maybe is like when war veterans get together and there is a special bond, because they have shared similar experiences and hardships. It reminded me of a song that goes;

I made it through the rain and found myself respected,
by the others who,  got rained on, too.

And, I made it through. We keep on going through the storm, and have come here to find hope, to learn about all the research and studies that are being made on our behalf. All the work that organization like Hemophilia of Georgia are doing to make our path easier. Then we remember that we are not alone in this difficult fight, but we have giants fighting on our side.

 

Journal Entry 10/12/18, 6:41 PM

The food and the exhibit hall’s entertainment and learning experiences have been amazing! I was able to talk directly to the people from Genentech, who make Hemlibra, which is wonderful since my son is switching to that medication! They were able to address my questions and concerns. It is always so scary when we switch to a new product. I learned of a program they have to help with the cost of the medication, until it’s approved by the insurance. I was able to talk to Dr. Sidonio (a pioneer in treatment for women with hemophilia) about my concerns and worries, and about the right treatment for me. It was a wonderful talk and I had so many questions answered. Now, I feel that I’m on the right track to be able to take care of myself and live a fuller life.

 

Journal Entry 10/14/18, 7:30 PM

Today, I’m going back home after the 2018 NHF Conference. I felt nostalgic seeing the hotel’s crew taking away the big banners and signs advertising the different pharmaceutical companies and their products. It gave the place a festive air.

The closing ceremony was as big and emotional as the opening. We had the joy and pride to stand up, clap and cheer for the Hemophilia of Georgia, which won many awards in different areas! Kudos to all the staff, who had made that possible.

Just as the previous days, the last one was also full of learning and discovery. Such a privilege to be living in a time where so many wonderful medications are being created for the benefit and convenience of the people with hemophilia. As you perhaps know, the product of the hour was Hemlibra. It was just approved last week, for hemophilia patients without inhibitors. Five minutes after reading the news, my son was calling his hematologist and placing and order with the HoG pharmacy. It went smoothly, as always, and we are just waiting for the insurance to approve it. During the conference, we found out that Genentech (who manufactures the medication), has a program that may be able to provide the product while we wait for the insurance’s approval. This medication, I believe, will revolutionize the industry and the hemophilia community. Patients will be more compliant, because the product is much easier to use, and also more portable. That will allow them to infuse easily, at any time, wherever they are.

Of course, we are a little bit scared because it’s relatively new in the market. However, I spoke to Doctor Roshni Kulkarni (Michigan State University for Bleeding and Clotting Disorders) and that conversation did a lot to assuage my worries. Dr Kulkarni is also one of the founders of an organization that supports women with bleeding disorders. As a woman with hemophilia, I was very happy to learn the existence of that organization. They gave a presentation and it was very interesting to find out about the progress that is being made in the diagnosis, treatment and care of women with bleeding disorders.

The 2018 NHF Conference was a great success and everyone who attended, left feeling empowered, in control, and with hope for the future.