Linda Alongi

"Only my family believed me."

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Like other young women growing up in the 1960s, Linda Alongi's pubertal years were heralded by the onset of her menstrual cycle. But unlike her peers, Linda's bleeding started at age 11 and was so heavy and so unpredictable that she learned to carry feminine products and a change of clothing wherever she went. Many days, she couldn't swim or participate in active sports with her friends.

As she grew older, Linda even began to mistrust herself on some level, wondering if she might be a hypochondriac. When girl talk turned to menstruation, she kept silent. Intuitively, however, she knew something was wrong. Common remedies, such as Midol and aspirin, unwittingly aggravated the problem. Likewise, oral contraceptives prescribed by her doctor only made the bleeding worse.

Nearly 35 years elapsed—35 years of carrying feminine products, of extra outfits, of worries about embarrassing breakthroughs, and careful planning for family vacations. That's when Linda met Fred Howard, MD, a gynecologist in Rochester, New York, specializing in women with pelvic pain. He said Linda had endometriosis and fibroids. But Dr. Howard suspected something more was going on. He referred Linda to a hematology clinic.

Linda warily accepted the referral. The clinic drew blood samples and came up with a diagnosis. The name of the medical condition that had plagued her for more than three decades was called von Willebrand disease. "I didn't believe it. I thought, oh my gosh, I'm not crazy! This isn't all in my head. This is really happening to me," Linda remembers.

Von Willebrand disease is the most common hereditary bleeding disorder. People with von Willebrand disease either lack sufficient amounts of a blood clotting factor called von Willebrand factor (vWF) or the structure of their vWF is altered, making it inefficient.

Today, Linda has a new lease on life. A hysterectomy has reduced the occurrences of bleeding. And inhaled medication called desmopressin acetate nasal spray gives her added confidence. She takes the medication before going to the dentist and before any invasive procedures.

"The desmopressin was fantastic. I immediately noticed that the periods were lighter," Linda says."Now that I've had a hysterectomy, I pre-treat and a post-treat before procedures. I wish I had it 35 years ago." Her work as a blood donor specialist can typically take her 1-2 hours from home, but Linda knows desmopressin is available if she has a nosebleed or other bleeding episode. She also wears a medical ID bracelet, and her coworkers know which hospitals carry desmopressin, if she would need it.

Linda's experience has provided her with valuable insights and a desire to help others through the National Hemophilia Foundation.