Twins share much and in the case of Josh and Alex, that includes a diagnosis of severe Hemophilia A.
Their condition was under the radar until age three when Josh needed surgery. Their mother, knowing that she was a carrier and that her father had hemophilia, asked for tests prior to the operation. He was positive as was Alex.
Watch the video above to learn more about the brothers, who are featured on the Portraits of Progress website. Portraits of Progress highlights the arc of progress in the treatment of hemophilia, once a disease that was both difficult to live with and shortened the lives of many patients.
Today, Josh and Alex are both 26 and live in London, where they both have careers in finance. But they remember the struggle of growing up in a neighborhood where everyone played rugby. They couldn’t join in.
“I did feel a bit left out in that respect, said Alex, a management accountant.
Josh, now a financial auditor, noticed how their younger brother, who does not have the bleeding disorder, could just bounce right back from “crunching tackles.” He knew the physical consequences for him and Alex could be severe so they learned to adapt to what they could and couldn’t do.
They also learned to self-administer clotting factor, which is given intravenously, at an early age. The added this important life skill around age nine because they wanted to go abroad on a school trip.
As adults, they serve as role models in a “Lads and Dads” program for children who have bleeding disorders. Alex and Josh also feel thankful they have good support from a physician who has been caring for them for a decade.
“We’ve realized the bleeding world is a family and a community,” said Josh, “rather than living with it on their own.”
