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During聽Hemophilia Awareness Month聽we reached over 300K people on social media by posting a fact-a-day about bleeding disorders.

Dr. Sanjay Gupta’s staff from聽Everyday Health, saw our efforts and reached out to us about working together on a piece about hemophilia. In honor of World Hemophilia Day, this informative article launched.

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Title:Myths and Facts About Hemophilia

By:Dr. Sanjay Gupta

Hemophilia is a bleeding disorder that affects an estimated 20,000 people in the United States. It鈥檚 a relatively rare condition, but one that has serious, even life-threatening implications for people like Rich Pezzillo.

Pezzillo, 29, was diagnosed with moderate聽hemophilia聽when he was 4 years old. One of his two brothers also has it, as did their grandfather. People with the condition are missing or have low levels of clotting factors 鈥 proteins that help blood clot.

The two most common forms of hemophilia are type A, which is caused by a lack of clotting factor VIII, and type B, which is caused by lack of clotting factor IX. The disorder usually occurs in males, though women can carry the mutant gene that causes it. Pezzillo鈥檚聽mother is a carrier.

鈥淵ou only need about five percent of clotting factor to function normally,鈥 said Michael H. Bar, MD, a hematology oncologist at Stamford Hospital in Connecticut. 鈥淧eople with anything greater than five percent usually don鈥檛 have the spontaneous bleeding that severe hemophiliacs do and only notice it if they have a trauma.鈥 People with severe hemophilia have less than one percent of聽clotting factor.

鈥淎 person with hemophilia bleeds longer, not faster,鈥 said Pezzillo. “Many think that someone with hemophilia can die from a paper cut. That’s just not true. In fact, the bigger problems are actually with internal bleeding,鈥 which can damage tissues and organs. Pezzillo鈥檚 brother Anthony was diagnosed with hemophilia after he had his tonsils removed and suffered extreme bleeding. That鈥檚 when the rest of the family was tested, and Rich was diagnosed.

Pezzillo, who grew up in Rhode Island but now lives in Washington, D.C., remembers that he bruised easily as a child. When he was 18, after having his wisdom teeth removed, Pezzillo鈥檚 gums began to bleed. Stitches weren鈥檛 enough to stop the bleeding, so he was admitted to the hospital and given more than 40,000 units of clotting factor 鈥 a treatment known as replacement therapy.

While in college, Pezzillo developed spontaneous bleeds in his right thigh and left hip. Joint bleeds can cause pain and chronic swelling, and sometimes require joint replacement surgery.

Pezzillo then developed one of the most serious聽complications of hemophilia. In roughly 20 percent of hemophilia cases, patients鈥 immune systems will reject the clotting factor and produce antibodies, known as inhibitors, to fight it.

鈥淏ecause the clotting factors are made from artificial sources and aren鈥檛 quite human, certain patients will have their immune system see them as foreign and attack,鈥 said Dr. Bar. As a result, the clotting factor doesn鈥檛 work.

Treatment for people with inhibitors may require higher doses of clotting factor or special blood products known as bypassing agents.

Pezzillo now treats his hemophilia prophylactically, injecting himself with clotting factor regularly. It鈥檚 costly and time consuming, but it allows him to remain active. Pezzillo, who works for the聽Hemophilia Federation of America, has run multiple half-marathons and one full marathon.

鈥淧eople don鈥檛 have to be tethered to the hospital anymore,鈥 he said. 鈥淏ut it鈥檚 still a disease a lot of people don鈥檛 know about, and it deserves more awareness from both inside and outside the medical community.鈥

Click HERE to read this article from Everyday Health’s website

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