“Life with haemophilia is challenging, but it doesn’t define us.”
In the framework of our #ThisWay Campaign, the EHC interviewed Camilla Wensing, a caregiver from Switzerland/Sweden, CEO of the Swiss Haemophilia Society, who shared with us her journey raising her son Enea, who is a patient with severe haemophilia B with a high-responding inhibitor.
She described the challenges of managing her son’s condition, including navigating the healthcare system, advocating for his care, and ensuring he led an active, fulfilling life, despite his condition. Camilla also emphasised the importance of community support, her personal growth, and the strength of her family in overcoming the difficulties associated with Enea’s condition.
We hope you find Camilla’s story inspirational. If you have any questions or would like to get in touch with Camilla, please do not hesitate to drop us an email.
Camilla Wensing, caregiver, Switzerland/Sweden
Enea had a lot of bruising on his back when he was very young. I vividly remember the paediatrician’s accusation that he must have been hit very hard. The shock and horror of being accused of child abuse left me speechless, and I walked out of the doctor’s office without any answers. Later, when my husband went back with Enea to the paediatrician, she relented and sent Enea for a blood test, which led to his diagnosis of haemophilia.
Getting appropriate care in the early days was a struggle. When Enea hit his head, the ER staff were unfamiliar with haemophilia, and I had to reach out to the university hospital in Bern. It was there, in the oncology department, that we finally found someone who understood our plight and assured us that we were not alone. They connected us with a haematologist and we were also introduced to factor IX treatment, administered on demand, when Enea was 2 and a half years old.
However, administering factor IX caused Enea to experience an anaphylactic shock, which led to a switch to factor VII – a treatment that was both very new and expensive at the time. This incident revealed that Enea has a high-responding inhibitor. Despite the challenges, including Enea being the only child in Switzerland with haemophilia B with inhibitors, we persevered.
Life with Enea required a lot of adjustments. He was fitted with a port-a-cath, and I quickly learned to be assertive and stand my ground when advocating for his care. Despite advice to limit his activity, we encouraged Enea to stay active. Drawing on my background as a competitive swimmer in Sweden, I knew that physical coordination and strength were vital for reducing accidents. We arranged special classes to help him develop motor skills and ensured he stayed active and healthy.
We tried to keep him fit, pay attention to what and how much he eats, and what kind of help we could have for him to make his life easier – for example, getting an electric wheelchair so that he can get to school on his own. We bought him support compression socks, and we also did a lot of taping which is incredibly easy; anyone can look for tutorials on YouTube or ask their physiotherapist how to do it.
School was another area where we had to be vigilant. I accompanied Enea on all school outings and trips, much to his chagrin at times, because I knew the teachers couldn’t be expected to know exactly how to manage his condition during emergencies while also taking care of 20 other kids. With that being said, most teachers did an incredible job with Enea, and we always felt like school was a safe and supportive environment for him. In the meantime, my husband worked hard to support us, allowing me to be there for Enea.
The Swiss Haemophilia Society was a tremendous source of support. Through it, I made lifelong friends and connected with other parents facing similar challenges. I firmly believe in the importance of joining such organisations; they provide a sense of community and invaluable resources. I even met my best friend, Andrea, who has two boys with severe haemophilia A with low-responding inhibitors, through the Society. The EHC has also been very supportive, all the staff members are wonderful, and being a member, being part of this community feels like family.
Another life-altering experience was attending the first EHC ERIN Summit in Barretstown, Ireland, in 2016. It was a revelation to meet other families dealing with inhibitors and to participate in workshops that broadened our understanding and support network. It was also a great experience for Enea who, as a result, got engaged in the community, became a youth ambassador, and is very happy that he gets to travel and meet other patients from different countries.
Enea’s journey has had its dark moments. He went through a period of depression due to frequent bleeds and constant pain, relying heavily on his wheelchair. On a recommendation, we went to Hamburg, Germany, to learn about Immune Tolerance Induction therapy, which he started in 2017 and completed a year later. The treatment was life-changing, and we even managed a liberating leisurely trip to Australia afterwards.
Now, Enea is living independently, attending university, and managing his own care. Despite frequent bleeds, he has learned to self-administer his injections. We feel incredibly fortunate to be in Switzerland, where healthcare and medical professionals are excellent and open-minded.
When the Swiss Haemophilia Society approached me about the CEO position, I hesitated due to my limited proficiency in French and German. However, after multiple offers and some soul-searching, I accepted the role. It’s been challenging but rewarding. The learning curve was steep, but the community’s willingness to help has been overwhelming. The key is to stay open-minded, willing to learn from others and ask for help.
My husband, Luca, my “blood sister”, Andrea, and my dog have been my anchors. Luca and I have been together for over 30 years. Despite his demanding work schedule, he would always drop everything to be at our side whenever Enea and I needed him. He is always very supportive and trusts both us and Enea’s care team to make the right decisions.
Despite being a positive person, I have my moments of frustration and breakdowns. Talking to Andrea, who understands my struggles, has been a huge help. Everyone is responsible for their own happiness, but it’s crucial to ask for help when needed, whether from a therapist, a friend, or even a pet.
Life with haemophilia is challenging, but it doesn’t define us. Enea is not just “a boy with haemophilia” – he’s a remarkable young man leading his own life. And I am not just “Enea’s mum” – I’m a resilient woman who has learned to navigate this journey with strength and grace.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
