A #ThisWay Story: Camilla Wensing

Believe, educate, advocate – A #ThisWay Story

In the framework of our #ThisWay campaign, the EHC interviewed Camilla Wensing, a caregiver from Switzerland/Sweden and 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

I’m originally from Sweden and have been living in Switzerland since 1992. I came to Switzerland to work in tourism, and it was in 1993 that I met my husband, who is Italian. In 1998, our son Enea was born. There’s no known history of bleeding disorders in my family, so it was quite a shock when Enea was diagnosed with severe haemophilia B at 18 months old.

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.