“After twenty years of hearing this verdict, you almost start to believe it, but deep down I knew they were wrong.”
Bed and Breakfast owner
Essential Thrombocythemia patient of Eygliers, France
*This story is a patient's first-person experience and is not an endorsement of any drug or activity by MPNRF. Please consult your physician (preferably an MPN specialist) before making any therapy or lifestyle changes.
“I am happy to know what is wrong with me, and I’m not scared of the future. Maybe I will morph into Myelofibrosis, maybe not, but I will accept my destiny. And I do believe there will be a cure someday.”
Having a rare cancer diagnosis is no small thing, but Wim Louage of Eygliers, France acknowledges he inherited his positive outlook from his mother. “She was such an incredible lady. I am proud and grateful that I am her son. She taught me to stay positive in life and to be happy with what we have.” Despite having a rare cancer, Wim is relieved to finally be moving on with his life. Recently diagnosed in 2015 with Essential Thrombocythemia, Wim is feeling better than he has felt in decades now that he’s receiving proper treatment. He says, “I am happy to know what is wrong with me, and I’m not scared of the future. Maybe I will morph into Myelofibrosis, maybe not, but I will accept my destiny. And I do believe there will be a cure someday.”
Like many MPN patients, a proper diagnosis took quite some time. For Wim, it took a lifetime of sorts. Since he was a teenager he knew there was something wrong, but doctors were always dismissive of his concerns. Wim had been dealing with unexplained fatigue, dizziness, burning sensations in his veins, sore tendons and muscles, and relentless headaches, only to be told by doctors he was anxious, too stressed and maybe depressed. He says, “After twenty years of hearing this verdict, you almost start to believe it, but deep down I knew they were wrong.” Interestingly, his doctors never told him anything was wrong with his blood counts.
In 2012 Wim was enjoying a visit with his father in his hometown of Gent, Belgium. But what was meant to be a relaxing trip, quickly turned into a trip to the emergency room. Wim had become extremely nauseous and was experiencing uncontrollable whole body tremors. At the time his platelet count was 1.2 million, (in 2015 he researched his previous hospital records) nearly three times higher than it should have been. The doctors somehow missed this. He was only given an anxiety drug, told his symptoms were stress related, and sent home.
By 2015 Wim’s symptoms were worsening; he was now dealing with pulsatile tinnitus, a type of ear noise that results in a very loud whooshing or buzzing sound, and left untreated can be maddening. Wim was also waking each morning with worsening leg pain. It was at this point Wim told his general practitioner to run a CBC, and the results were alarming enough for his doctor to refer him to a hematologist. After a bone marrow biopsy confirmed a diagnosis of ET with the CALR type 2 mutation, his local hematologist prescribed Anagrelide. A few months later though Wim decided to meet with renowned MPN specialist Professor Jean-Jacques Kiladjian in Paris, France who suggested trying Pegasys (pegylated interferon). And after fifteen months, Wim is very happy with his results. During the first three months of this treatment he was fatigued, but since has no apparent side effects. He says of this new treatment, “My quality of life improved enormously. I saw my MPN expert once, and he now stays in touch with my local hematologist. My blood is checked every six to eight weeks, and I visit my local hematologist every four months.”
Wim also has other cause to celebrate. Since 2012 he’s been living out his dream in the French Alps. After nineteen years in a demanding and stressful career in finance and human resources, Wim was ready for a change of pace, so he and his partner embarked upon their shared dream of owning and operating a bed and breakfast. Situated in the Southern French Alps in the small village of Eygliers, they enjoy meeting travelers from around the world at their mountain chateau La Maison du Guil. Although the days are long and demanding in the busy summer season, Wim enjoys the work, especially managing the property gardens now that he is symptom free.
But he doesn’t stop there. Shortly after his diagnosis he created a private Facebook support group for CALR positive patients. Today the group has grown to over 600 members. He says, “I’m very pleased that we could bring more than 450 CALR positive patients together in one Facebook group, but we are not a CALR exclusive group.” To date, the group has evolved into an international forum with several types of MPN patients.
After his positive experience and improved outcomes, Wim believes all MPN patients should have a specialist, even if they are doing well. He recommends patients advocate for themselves, and learn as much as they can about their condition. Wim believes a cure is possible, but not without sacrifice. An advocate of fundraising, he suggests all patients should support a form of donation following their own financial possibilities. And reminds us, “Research is very expensive, but it is the only way to find a cure for this disease. Much progress has been made, and better treatments are becoming available. Some of these treatments improve our quality of life, and this is very important for patients who have a more severe MPN.”
Contributed by: Jennifer Acker
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.