Author Archives: admin

Losing a Legend: Barry Haarde Passes Away at 52

The bleeding disorder community has suffered an unimaginable loss: Barry Haarde, the founder of the “Wheels for the World” campaign, passed away over the weekend. Haarde was just 52 years old. MORE: New documentary explores what it’s like living with a bleeding disorder Barry Haarde was born with severe…

Man Becomes First With Severe Hemophilia to Climb Seven Summits

Earlier this month, Chris Bombardier became the first person to climb the Seven Summits with severe hemophilia. The Seven Summits consist of the tallest peaks on each continent: Carstesz Pyramid in Australia, Mount Everest in Asia, Denali in North America, Mount Elbrus in Europe,  Mt. Vinson in Antarctica, Mount Kilimanjaro in Africa and Mount Aconcagua in…

SB-525 Gene Therapy Phase 1/2 Trial Begins for Hemophilia A Patients

The first patient in a Phase 1/2 clinical trial (“the Alta trial”) designed to assess safety and tolerability of SB-525 gene therapy has received treatment. Sangamo Therapeutics, in a collaboration with Pfizer, is developing  the SB-525 gene therapy to correct the Factor VIII (FVIII) defect in hemophilia A…

3 Tips for Coping With a Hemophilia Diagnosis

Discovering your child has hemophilia can be devastating. While you will certainly need to make some lifestyle changes moving forward, with the correct treatment and preventative measures, there’s no reason why your child can’t live a happy and healthy life. To help you come to terms with life with hemophilia and…

4 Hemophilia Screening Tests

In order to determine if a person has hemophilia, they will have to undergo various tests to see if their blood is clotting as it should be. There are four different types of blood screening tests that are used to diagnose hemophilia: Complete Blood Count A complete blood…

10 Physical and Psychosocial Benefits of Physical Activity for Hemophilia

Hemophilia is a genetic disorder, mainly affecting men, caused by a deficiency in clotting factors VIII (hemophilia A), factor IX (hemophilia B), or factor XI (hemophilia C). Although patients had been previously warned against physical exercises, there are in fact numerous benefits of physical exercise for hemophilia sufferers, according to hog.org. MORE: …

4 Things to Consider Before Getting a Service Dog

Having a service dog can greatly enhance the life of someone living with a chronic disease. They allow patients to regain some of their independence by helping with small everyday tasks like opening and closing doors, fetching meds, acting as a prop or support as their owner stands, switching on lights and attracting attention…

How to Live Your Best Life With a Chronic Illness

If you’re living with a chronic illness, it’s easy to slip into a malaise and feel sorry for yourself. This isn’t a helpful state of mind and it potentially means you’re missing out on life. In this video from NewLifeOutlook, Anna Scanlon shares her five…