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Jun. 23, 2014

TOPIC: Patients & Members

Living With Essential Thrombocythemia (ET)

Posted by Mary Dunkle

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:

  • Learn as much as you can about your disease. Knowledge is power and it will enable you to share in the decision-making for your care and treatment.
  • Find the most qualified hematologist in your area and, if that is not possible, find a medical professional who is willing to listen and who is willing to consult an MPN specialist on your care.
  • See one of the well-known MPN specialists for a second opinion and, if possible, visit that physician once or twice a year for follow-up.

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.

5 Responses to “Living With Essential Thrombocythemia (ET)”

  1. Mrs.&Mr. Randau says:

    We have known Antje for years.

    She is a remarkable lady w./ ” heart of gold “.

    Her positive attitude re. daily life and her desire to be

    of assistance to others who suffer from MPN is remarkable.

    May her efforts be recognized and bear the fruits of her

    dedication.

    Your friends Elke and Ralph

  2. Hi Mary,

    I completely agree with this key point: “Learn as much as you can about your disease. Knowledge is power and it will enable you to share in the decision-making for your care and treatment.” I saw mylself in this article. Thanks.

  3. Wendy says:

    I was diagnosed about six years ago. Went on hydroxyurea about two years ago and for the most part have been relatively healthy. I am sixty-years old and continue to work in the tech dept for an environmental conservation organization. I just recently started experiencing pain in my elbow — just the right one — anyone had this symptom? I’m seeing my doctor tomorrow and then my hematologist. I would appreciate any insight into this new development.

  4. Mike Roesch says:

    I was diagnosed with ET about 18 months ago. I am on 1000mg of Hydroxyurea which I have NO problems with. My counts have dropped but still over 600. My question, in looking for additional life insurance, do I need to list this as a cancer-type disease or not?

  5. John Milliner says:

    I have had ET for the past 8 to 9 years, at first undiagnosed, have progressed from 500mg Hydrea to now 1500mg daily. I have a six weekly blood test, so can monitor the platelet count. It is usually in the 500 to 600 range. I was diagnosed in 2008 after an annual health check showed a count of 1100, shows the importance of an annual inspection. If I hear of any new “Cancer Cures” that sound promising I give them a go for six weeks, added to my current dose of Hydrea. I tried a cupful of Asparagus liquidised daily, for an adverse reaction. platelets increased about 100, another time I tried grated frozen lemons on my breakfast, no effect as a non drinker I tried 125 ml red wine, just about no effect, and I would rather have a coffee, so that was no go. The only thing that does work is 15mg Fish oil Morning and night, my Doctor Approves of this, it is founded in medical fact.

    I Have no real side effects, and after I started taking Hydria 6 years ago my use of panadol virtually ceased from several headaches per week – month, now it is several times a year.

    I do have some sensations of tingling in my fingers, but little else

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