In October 2018, 17-year-old Emma Elise Nilsen Reiakvam got her ankle pinched in a door. Little did she know that this innocent incident would be the start of a life of enormous pain.
– I was visiting my best friend. I also managed to slam a door on my left ankle. I did not think much about it there and then, but already two days later I went to the doctor.
At the doctor’s office, they first thought the ankle was broken and therefore took a “squeeze test”. But it was not broken. The X-ray came back just fine, something Emma reacted to – she was in so much pain. Then they were told that it would pass after two weeks.
It did not.
– We kept going back and forth with X-rays, MRI and what was. After three months, I was diagnosed with CRPS.
It was Sunnmørsposten who first told the story of Emma.
“Suicide disease”
CRPS is a nerve disorder that is so painful that it is called “suicide disease”. According to Oslo University Hospital, it is not known exactly why CRPS occurs.
CRPS usually accompanies an injury, such as an ankle or wrist fracture. It is a relatively rare condition, and on the McGill pain scale, CRPS is measured as ten points higher than a birth.
Emma herself finds it difficult to describe the pain.
– What is special about nerve pain: I did not understand before what nerve pain was, it is a completely different type of pain. It feels like I’m just being grilled. It burns all over the body and it stings, like stab wounds everywhere. Just a shower feels like you are being pinned down. It is very intense, special pain. The worst pain is in the left leg, but has begun to spread. Now I have it everywhere, she explains.
When Emma was diagnosed, she mostly sat in her room at her parents’ home. Now she tries to be positive, but admits that some days are worse than others.
– On the worst days, you do not think about those who are around you all the time; you forget them. I have been lying and crying and howling; “I can do no more” to them. There is a lot of bad conscience involved.
See the full interview at the top of the case!
Support from big sister
Big sister Malene Nilsen Reiakvam describes Emma as the family’s clown. A fool who is bubbly and gentle. She has always been – even now, despite the enormous pain.
– She is kind-hearted, more than anyone else I know in the whole world. She is good throughout, says Malene as she looks at her sister.
The last three years have been a great strain for the whole family.
LARGE SUPPORT DEVICE: Emma (left) receives good support from family and friends. Here with big sister Malene and her cohabitant. Photo: Private
– It is absolutely awful, you feel so helpless when she lies there and tears roll down her cheeks. You can not think of touching her, because it makes everything worse. You just have to sit there with her and make sure she manages, she says.
Often the family must finally call the ambulance. The hospital will be the only solution.
– It’s absolutely cruel. There is no worse.
In recent years, Emma has been sent around Norway to find the right treatment. Sometimes the treatments have worked, but the effect has always diminished.
– The only thing that has helped is the infusion at the hospital. It takes the worst painkillers with ketamine and lidocaine, which is a very strong anesthetic. It is not very good for the body, and not nice to lie there and get it. But that has been the only thing that has worked for me.
Going to the USA
Now the family has decided to visit a private clinic in the United States to try their luck. This weekend they leave, and there awaits at least a twelve week long stay with 4-6 hours of treatment every day.
The 20-year-old goes against the doctors’ recommendation, as they are afraid that the treatments will not work and that the family will lose a lot of money. This does not worry Emma.
– I’m only 20 years old. It’s about my future, about my life. You can not put a price tag on someone’s life. They have a success rate of 84 percent at the clinic that I am going to. If the doctors do not want me to go there, it’s fine with me. I have faith myself, and my family supports me.
Also known and unknown support the family. After Malene created a Spleis for the little sister, they have received half a million kroner. They estimate that the trip and treatment will cost around 700,000 kroner.
– It’s very moving. We are eternally grateful. It has exceeded all expectations, so we are very, very happy. We only need a little and hope we get it in before we leave, says Malene.
– If this should work, and you get well: What do you dream of being able to do most?
– It is much. I really want to move and study, as most people my age do. My friends have moved. I’m the only one left at home. It would have been nice to get out into the world, work a little again, says Emma and continues:
– Just ordinary everyday things that most people take for granted: Dress without pain, take a shower without writhing in pain afterwards and want an end to everything. Take a hike in the mountains. It does not have to be big.
