I’ve met many great people on Facebook in the past year or so and even though they’re only “virtual” friends, they have definitely “disturbed” me, in a good way, of course.
One such person is Barry Haarde, who has severe hemophilia A. He is a 30-plus year survivor of HIV and hepatitis C, which he contracted through blood products used to treat hemophilia. On top of that, Barry also suffers from peripheral neuropathy and has a total knee replacement.
Last month, Barry launched Wheels for the World, a cross-country bike ride of 3,667-mile from Astoria, Oregon, to Portsmouth to New Hampshire for the benefit of Save One Life. Save One Life, founded by dear friend and fellow hemo-mom Laurie Kelley, is a humanitarian organization helping children with hemophilia in developing countries including the Philippines.
Barry is one hemophilia advocate that has truly inspired me and I’m sure thousands of others in our global hemophilia community.
But do you have to bike across the country to be an advocate? Definitely not. You don’t have to do what Barry did to be a hemophilia advocate and succeed in it. You don’t even have to be a person with hemophilia to qualify as a hemophilia advocate.
What then is a hemophilia advocate? It simply means you have a heart for people with hemophilia and are willing to help promote their well-being.
Here are 4 practical ways to be a hemophilia advocate:
- Talk about hemophilia. In your school. In your blog. In your FB wall. In your tweets. Wherever your sphere of influence may be, talk about hemophilia. By doing so, you raise awareness on this still largely unknown disorder.
- Volunteer. Whether you have hemophilia or you don’t, if you have a heart to reach out to the hemophilia community, volunteer your services. You can organize psycho-social activities for the youth group, or a camp for the children or you can assist in the general meetings. Whatever way you think you can help, let your local hemophilia community know that you are willing and available.
- Visit a sick person with hemophilia. Every now and then, a “blood brother or sister” gets sick. Visit him/her whether in the hospital or in his/her home. That someone will be grateful to know you care.
- Be active in your local hemophilia group. While being “connected” in social networking sites like Facebook and Twitter is good, nothing beats being connected in flesh. So go, attend meetings of your local hemophilia community.
There are four active hemophilia groups in the Philippines. These are HAPLOS, the national organization based in Manila; Blood Brothers also based in Manila; HAPI-C based in Cebu City; and HAnD based in Davao City. Both HAPLOS and Blood Brothers have affiliate organizations in different cities. They can also be found on Facebook. For those outside the Philippines, check Facebook as well for the nearest hemo group in your area. ##