This report was submitted by Wnedy , President of Pulmonale Hypertensie VZW, the Belgian Pulmonary Hypertension Association. Many thanks Wendy for sharing with the community!
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2023 was a pretty busy year for our association, it was all about getting together, informing our members and learning a lot ourselves. Here is an overview of our activities this year:
Farewell Ghislaine
Belgian top model and fashion icon Ghislaine Nuytten died in January 2022 from the effects of pulmonary hypertension. Her husband, Wilfried Hendrickx, wrote a book about her last years with the disease and spoke about it in Humo, a populair magazine in Flanders, early this year. This resulted in an honest and recognizable story about living with an advanced stage of the disease.
Rare Disease Day
This year’s RDD campaign, pulled by the Belgian umbrella patient association RaDiOrg, focused on the connection between all rare diseases, because alone we may be rare, but together we make up a large group of some half a million Belgians. We can look back on a successful campaign, with a lot of media attention, including for pulmonary hypertension! Professor M. Delcroix was featured in a national newspaper, President Wendy made an appeal on a local newspaper and television, and finally, Vice-President An ensured that Antwerp’s skyline was dominated by Rare Diseases Day, by changing the lighting of the famous Port House from white to the colors of ‘Rare Diseases Day’.
Webinars
As is our annual custom, we organize a webinar series during the winter. These webinars aim to inform patients without having to leave the house. They are also recorded and put on our website and YouTube-channel so that they remain accessible at all times. This year’s agenda included the following topics: Informal care, self-management: recognizing the symptoms of right heart failure and social rights.
Advocacy in practice
Many events took place this year where we made the patient’s voice heard through testimonials and workshops. President Wendy and treasurer Erik testified at a Johnson & Johnson workshop, vice-president An gave a testimony for physicians in an MSD webinar and together with experience expert Wim at a Johnson & Johnson event for physicians.
Training patient experts
The patient’s voice is becoming increasingly important in the decision-making processes of government departments, hospitals, health insurance funds, healthcare providers, pharma companies, … When developing and improving services or products, the patient’s opinion is increasingly sought. However, this is only possible if this patient is also aware of the processes and procedures being followed and the objectives being pursued. This is why the Patient Expert Centre organizes training and ensures cooperation between those different players, so that the patient’s voice is heard.
The training consists of a general part and a disease-specific part with weekly online classes. In 2023, 8 patients from our association took up the challenge, they may call themselves ‘patient experts’ from now on!
Image: Photo Lore + quote “Thanks to the patient expert training, I gained more insights about my disease, but also about general issues such as the social map of Belgium. This knowledge helps me to help my fellow patients and to volunteer for projects of my patient association such as reading up on Janssen-cilag’s PAH starter kit.” Lore, patient expert
More info: https://patientexpertcenter.be/
Info moment on PH for new patients
On 21 October, we organized an info moment for new patients. Professor C. Belge gave a presentation on what PH is. Among other things, the different types of PH, possible causes and also treatment options were discussed. Besides basic information, the day also covered financial and practical support and tips on how best to deal with pump medication and oxygen use, among other things, and the impact on your daily life.
“I have learned that sometimes I have to hand my work over to someone else and that it won’t always be the way I want it, but then I have more time to do nicer things myself.” (patiënt)
Theme afternoon ‘Living Loss’
Grief is often associated with a death, but saying goodbye to your life as it was, such as due to a chronic illness, can also involve a grieving process. As patients, we all experience that there is a life before and a life after the diagnosis of PH. On Saturday 21 October, we had Psychologist and Professor Emeritus Manu Keirse as our guest with a lecture on ‘living loss’, followed by a panel discussion with Sven Van Lommel (PH psychologist UZ Leuven hospital), Tess Wynants (PH nurse UZ Leuven hospital), Wim Schauvliege (PH patient), Katleen Verbergt (mum of) and her son Vic Moens (PH patient). Some interesting quotes from this afternoon were:
“Grieving is normal behavior, of normal balanced people.” Manu Keirse
“I have always been very honest and open with Vic. A lot of people commented on that. I’m happy to hear that I’ve done that well anyway.” Katleen, mum of a PH-patient
“The disease turns your whole life upside down. Whether it’s depression or not, at least you don’t feel good.” Wim, patient
“When diagnosed, people sympathize, but after a while they don’t, while each time there is a confrontation with what is no longer possible or because something changes in treatment.” Anja, patient
“The nurses are ready to give additional explanations because there is a real need for that. I take as a tip that proactively addressing the patient, even if it’s just five minutes, can make a big difference” Tess, PH nurse
Scientific research funding
Several actions were done during the year, both by us and by third parties. For example, we received a nice cheque from the Mercier-Van Lanschot bank. And we sold sweets for PH. All together, this enabled us to raise 12,000€ for scientific research on pulmonary hypertension! This money was transferred to the KULeuven University for the ‘pulmonary hypertension’ research chair led by Prof. Dr. M. Delcroix.
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