In 1992, Antje Hjerpe was diagnosed with a rare blood disease known as “essential thrombocythemia” or ET. A review of previous lab records showed that she had been living with this disease for at least six years prior to diagnosis.
The symptoms that led her to seek medical help included increasing fatigue and migraines several times a month so severe that she had to leave work and go to bed in a darkened room. Testing showed that her platelet count was greatly elevated – 2.6 million as opposed to the normal 150,000 to 400,000 – and she was immediately referred to a hematologist.
Over the years since then, Antje has become very involved in assisting and counseling other patients and their families through the MPN-NET/MPN Education Foundation. Her own experiences as a patient give her understanding and awareness of the needs of patients – especially the newly diagnosed.
“Having had an aggressive ET for almost 28 years with 22 years of myelelosuppressive medication, I feel very blessed to say that I am doing well,” Antje says today. “The most important advice I can give to others is:
Antje’s service to MPN-NET/MPN Education Foundation is voluntary. The organizations have no paid staff, but they provide service that is very important to patients and families affected by MPNs.
The MPN Education Foundation is a nonprofit organization that hosts a patient conference every two years that brings together patients and leading medical experts. The conference is named for Joyce Niblack, who in 1996 founded MPN-NET with her husband, Robert.
MPN-NET is an online support group with more than 3,000 members around the world including patients, family members, friends, researchers, and physicians who share clinical and non-clinical information and support.
MPNs, or myeloproliferative neoplasms, are a group of closely related hematological malignancies in which the bone marrow cells that produce the body’s blood cells develop and function abnormally. The three main MPNs are: essential thrombocythemia (ET), polycythemia vera (PV) and primary myelofibrosis (MF).
These conditions often go undiagnosed , as happened with Antje. MPNs are progressive and can affect anyone at any age. There is no cure but there is treatment that, in many cases, can be beneficial to patients.
Over the years, Antje has taken “myelosuppressive” medications – ones that decrease the bone marrow’s production of blood cells. She has also benefited from opportunities to interact with MPN medical experts and researchers, and from learning about the latest developments in treatment and research at the Joyce Niblack Memorial Conferences.
While ET is considered a serious disease, Antje worked until age 60 in a busy medical practice and now enjoys an active retirement with her volunteer work for the MPN community and keeping up with her grandchildren.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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