When Christine Bond was diagnosed with hemophilia B in her late 20s, she began to prioritize her health, starting with losing weight. Yet as she got older, dropping pounds seemed impossible.
“I lost 15 pounds but gained it back super-fast,” Bond, 47, recalls. “I just felt so old. And tired.” Then an endocrinologist diagnosed her with insulin resistance (also known as prediabetes).
For Dawn Rotellini, chief operating officer of the National Bleeding Disorders Foundation, a diabetes diagnosis in 2014 on top of her hemophilia came as a shock. “I went in for my annual physical and they ran my labs. The doctor said, ‘Your A1C is concerning, but we think this is a mistake,’” says Rotellini, 61. A repeat test confirmed she had prediabetes. Within two years, it progressed to diabetes.
Risk Increases with Age
Hematologist Doris Quon, M.D., medical director of the Hemophilia Treatment Center at the Luskin Orthopaedic Institute for Children in Los Angeles, says improved treatments help people with hemophilia live longer, but that means they have to pay attention to the diseases that come with aging — including diabetes. Many aren’t even aware that they are at risk, or even having symptoms, until it becomes more serious.
“Patients mention that they have to urinate all the time, and that they’re always thirsty,” she says, noting the classic symptoms. “It’s very important to get treated because it affects the kidneys so you could end up needing dialysis, and you may also develop neuropathy [a loss of feeling in your hands and feet], or wound healing and vision problems.”
“The thought of losing a foot or my vision from diabetes is a scary thing. I’m trying to avoid it,” says Bond, a tax preparer from Edgewood, Maryland. She initially went on Metformin, a diabetes drug, but eventually switched to Ozempic, which helped her lose weight.
Rotellini found Ozempic made her nauseous. She switched to Trulicity, and her numbers have improved. She also got a glucose monitor, which “absolutely changed everything for me” because it helped her track her glucose levels throughout the day.
Men with hemophilia are especially susceptible to developing diabetes in later years.
Know the Symptoms
These are the most common symptoms of diabetes:
- Frequent urination
- Excessive thirst
- Extreme fatigue
- Blurred vision
- Frequent headaches
- Cuts or sores that are slow to heal
Be Screened
Many people with bleeding disorders rely on their hematologist for all of their health care, but Quon urges them to see a primary care physician for screening, especially if they are overweight or have a family history of diabetes.
If you do have diabetes, lifestyle changes — such as avoiding processed and sugary foods (especially soda), eating more vegetables, and exercising — are as important as medication. The side benefit, Quon says, is your joints will be healthier.
Bond saw that firsthand. “Now that I weigh less, my target joints aren’t as problematic.”