EWMA 2020, 13-15 May

EWMA 2019 Education Session: Fika meeting with the Swedish patients. Here is what the patients have to say?

During this meeting, you will be able to listen to the patients stories and learn more about the activities of the EWMA Patient Liaison group. The Swedish patients will discuss the quality of the available patient materials and provide their feedback on the definitions of person-centred and patient-centred care. The meeting is organized by the EWMA Patient Liaison group and RiksSår.


Speakers

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Harry Hansson, 40 years old

My name is Harry Hansson. As a child, I was diagnosed with cancer (medulloblastoma) and treated for many years.In my twenties, I developed problems with blood clots, and exams showed APC resistance (activated protein C resistance), which can lead to post-thrombotic syndrome and severe leg ulcers.

Since then, I have had recurrent leg ulcers, which were treated with dressing changes by different nurses.

In 2002, I got in touch with the Blekinge Wound Healing Centre, where I got good information about how to treat my ulcers and how to avoid developing new ones. I have had to live as a leg ulcer patient, but recently an operation (recanalization and stent) increased my quality of life immensely. Today, the wound surface is intact and reasonably healthy.

I’m now a board member of PASS, the Association of Patients and Relatives, and I’m a part of RiksSår’s steering group.


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Inger Jardevi, 70 years old

My name is Inger Jardevi, and I used to work as a global credit manager for Ikea Components. After retiring, I acquired an extremely painful leg ulcer, which made my life miserable. The wound was treated with dressing changes at my health care centre, but the lack of diagnosis and continuity of care left me depressed and unhappy. After five months, I got in contact with the Blekinge Wound Healing Centre and got real professional help. The ulcer was diagnosed as venous-arterial, and the correct treatment meant that, after just two weeks, I was free from all pain and all medicine. After getting the right kind of surgery, the ulcer healed within five weeks.

I'm now the chair of PASS, the Association of Patients and Relatives, and I'm part of RiksSår's steering group.


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Lars Gustafson, 50 years old

My name is Lars Gustafson, and I am Lund University-trained geologist. In 1994, I developed Type 1 diabetes, which did not stop me from solo-sailing in the Caribbean in 1995.After my sailing trip, I worked as a geologist in search for gold. Later on, my brothers, my girlfriend and I formed a company making high precision global navigation satellite systems equipment. I have worked for my own company for the past 22 years selling high accuracy positioning equipment.

 

In May 2015, I hurt my foot. My leg became infected and I went to the hospital in Karlskrona, where I live, several times. In August 2015, an x-ray was taken, and a fracture was discovered. This put me in a cast for six months. During my recovery, I developed a Charcot foot. In 2017, I developed chafing under my left foot and was once more in a cast; unfortunately, it caused an additional wound under the same foot. These wounds were not healed until January 2019. In March of this year, I developed a new infection on my ankle and was in yet another cast. This is my situation today.


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Ronny Persson, 52 years old

I work as a product specialist / salesman, and I participated in the Paralympic Games in March 2018 in Pyeongchang, South Korea (and in earlier Games). In December 2017, I developed a small, category 3 pressure ulcer that could heal if I had continued to offload, and not just over Christmastime. I had a lot of preparations and travels within Europe for tournaments to prepare for the Paralympics in March 2018, so I offloaded when I could, and as much as possible. The day after my return to Sweden, I had an appointment booked with Madeleine Stenius, and she sent me directly to the hospital, where they performed a surgical debridement. After a few months of bed rest and treatment with NWPT as an inpatient for a couple of weeks, followed by in-home care, the wound had decreased, and a flap surgery was performed in September 2019 in order to increase my quality of life.