The WFH World Congress is a unique and special event where, in one location, you can experience both the highs and the lows of care for hemophilia and other bleeding disorders. My wife Marion and I have attended every World Congress since we volunteered for the one in Montréal in 2000. But this one, after over twenty years was particularly special.
Back in 2001, there was an assessment visit between Hemophilia Saskatchewan and the Mongolian National Association for Hemophilia. Faye Katzman, Dr. Sheila Harding and I went to Ulaanbaatar for that assessment visit. While there, we had dinner with Mandaa and her about four-year-old son, Injig who had severe hemophilia. After dinner, Injig had a bleed in his buttock. We spoke about the acrostic RICE (Rest, Ice, Compression and Elevation) and found some ice to put on Injig’s bleed. Mandaa commented to us the next day that it was the first time he had slept through the night having had that kind of bleed! Hemophilia Saskatchewan twinned with the Mongolian National Association for Hemophilia for the next four years, helping them develop greater capacity and advocacy. Although we’ve had a bit of contact with Mandaa over the years, we’ve not been in touch very much.
Mandaa and her family with Faye Katzman and Dr. Sheila Harding.
At the time of our visit, the oldest living person with severe hemophilia was in his early 20’s and had already experienced severe crippling due to joint arthropathy and bleeding. When Mandaa looked into the future for her son, seeing this young man was deeply discouraging. Our hope was that, along with our twinning, the strength of the Mongolian Association would improve hemophilia care in Mongolia.
Coming back to the 2024 World Congress, while in the Exhibit Hall, Marion and I noticed a young fellow whose name tag indicated he was from Mongolia, but whose name we didn’t recognize. We asked him if he knew a woman named Mandaa. He said that this was his mom! We were standing with Injig! He’s now in his 20’s and as you can see from the photo he is doing very well. He sent a copy of the photo to his mom who mentioned how glad she was for us to see him.
Marion and Eric with Injig at the WFH 2024 World Congress.
This is one of the joys of a long-term volunteer involvement. You actually get to see some of the fruit of your work through the lives of those who now can benefit. That is what made this WFH World Congress very special to us!
Eric’s caricature was done by Ekawat Suwantaroj, from Thailand. Ekawat, who has severe hemophilia A, is currently the Vice-President of the Thai Hemophilia Patient Club and was just re-elected on the WFH Board of Directors as Lay Member.
