Soe and Eveline met at the 2012 Edinburgh patient support meeting. They had a wonderful time and became friends. And friends are important, because it is a hard life. But together they can make a difference.
Eveline & Soe were interviewed in Huid & Haar Magazine to share their story. A friend of Eveline’s translated this article for us and we have posted that translation for you below or Click here for a pdf of the article in English and the original article in Dutch.
Huid & Haar Magazine volume 17, 2013 issue 1
A rare skin disease, which is incurable and hurts almost every day of your life. How does this affect a patient? Eveline Schloesser (21) and Soe Mattijssen (18) talk very frankly and intensely about it. They both see one positive side effect of their condition: it made them friends.
Faults in any of five genes cause pachyonychia congenita (PC), a rare genetic skin disorder. Eveline and Soe: ‘Nails do not grow in a normal way and infections are very painful. Furthermore, the skin of the hands and (even more) the soles of the feet are thickened. You get blisters, callous and painful splits, that make walking almost impossible. Sometimes tongue and mucous membranes are also affected.’
The disease was already visible right after birth: extremely white hands and feet. Soe’s problems began almost immediately: ‘I could not drink from a bottle with a nipple, so when my mother wanted to stop breastfeeding, she did not know what do. In the end she continued breastfeeding until I was ten months old. After that, I could eat fruit snacks from a spoon and drink out of a trainer cup. Because of the sores in my mouth, in the nursery food was sometimes given to me through a syringe. Those sores where probably the first signs of PC and did not have anything to do with a rubber allergy, as was suggested.’
As Soe tried to take her first steps as a toddler, it was clear that walking would be problem for her. Soe: ‘On a pebble beach in Italy I immediately got blisters and open wounds.’ A biopsy at the age of one and a half, showed that Soe suffered from a serious skin disease. For Eveline it remained a mystery for a long time. A dermatologist told her that he had seen something like it before, but only last year she learned what she was really suffering from.
Like jumping of a bike
‘As a child I soon realized that I was different from other children,’ says Soe. ‘I could not walk as far as they could. Because I wanted to be one of them, I kept on going until my feet were bleeding.
Eveline outlines the emotional consequences: ‘You don’t know anyone with the same problems, which makes you feel lonely and helpless. You cannot share the pain, because no one else knows how it feels. A doctor once said: ‘It probably feels like walking barefoot on knives.’ But no one can imagine what that feels like, so that image did not help at all. A friend of mine compared it with jumping of a luggage carrier of a bike too fast. Every Dutchman can relate to that and it is exactly the pain we feel all day long.
This disease has a huge impact on your life. At school I was often late in class, because of the problems with my feet, but no one believed me. Teachers and other grownups thought I was just putting on a show. Classmates hardly noticed anything, because I tried to hide my problems, in order to fit in with the group.
Scooter to wheelchair
Soe’s problems piled up. ‘Because I could not walk long distances, I got an electric scooter when I was seven years old. The other kids did not make fun of me. On the contrary, they were all jealous! But it was no ideal solution: in Barcelona I was denied access to a stadium because of my scooter, although my father tried to explain that it was not just a toy, but an essential vehicle for me.
Other means of transport rapidly succeeded each other. Our house had to be renovated, because I could not get up or down the stairs anymore. I got a bedroom downstairs, while all the others slept upstairs. I felt excluded.
My hands were another problem. Because my nails did not only grow longer, but also thicker, I could not turn Memory-cards with my own hands and was unable to close a zipper. Painful manicure did not help a lot, so if possible I tried to hide my hands.
At the age of twelve I ended up in a wheelchair. From that moment on, I simple sat on my hands so my nails were not visible. I wanted to keep that problem to myself.’
Live and dive with it
Eveline, Soe and their parents tried all possible treatments within the medical, paramedical and alternative circuit, but a cure simply does not exist. The only thing a podiatrist can do, is regular maintenance of the feet.
Soe: ‘In fact, I am the doctor, because I am the only one who knows how it feels and how my body will react to physical exertion.’ Her disease has quite some impact: ‘I was insecure, easily hurt and operations caused a lot of tension. But my resistance has grown, it simply had to.’
Scuba diving is Soe’s main hobby. ‘When I dive, I am just like everyone else, without handicaps. It makes me feel like flying. During the holidays, I dive whenever and wherever I can, in warm areas like Egypt, Bali, Israel and Croatia.
When diving, I have to wear waterproof gloves, because otherwise my hands would be weak and wrinkled within ten minutes, like the hands of ‘normal’ people who stay in bath for a long time. Very painful!’
Eveline, currently walking with crutches because of a broken foot: ‘Relationships are hard. You never know when to tell a boyfriend about your disease. At one occasion it was easy: we were both drunk and as I told him what was wrong with me, he really listened. But in the end he did not really understand it…’
Soe and Eveline met at the international PC-meeting in Edinburgh (Scotland) in 2012. They experienced three wonderful days with kindred spirits and became friends. And friends are important, because it is a hard life. This disease makes you vulnerable. You often think you know what will happen, but then it turns out another way. Every day is trial and error.
Eveline: ‘Sometimes it takes half an hour before I have the courage to get out of bed and face the pain. Because I know the pain will come with the first step.’
Talk about it
Eveline: ‘There are five registered PC-patients in The Netherlands.’ She is sorry that she did not keep a diary when she was younger. Nowadays she does, every now and then.
On her own website, Soe talks about her life and tries to raise money for research on PC.
A rare skin disorder is the connection between these two young women. No big statements, no self-pity, no tragedy, but you can feel the grief in their words: ‘A permanent sense of loneliness.’ Their stories also show willpower: they bend, but do not break. There is hidden anger, but no resignation, no surrender. They want to live life to the fullest and keep looking at the future. Eveline wants to become a lab assistant and Soe is planning to study medicine after high-school.
Despite their optimism, they are aware of their unusual situation. As Soe puts it: ‘Every doctor I visited, showed me to his colleagues. “Look at this, this is very special.” I will always be at the centre of attention, against my will.’
From Eveline’s diary
‘I had to give up a lot: tennis, soccer, dancing and running, which I enjoyed doing when I was younger.’
‘I cannot get used to the itching. Something my feet are covered with callous and I can hardly reach it to scratch.’
‘My feet get very hot in bed, even if it is freezing outside. Icepacks help to cool them down and to sleep well.’
‘Sometimes it hurts so much I am afraid to get out of the car, when I am supposed to go shopping with my best friend.’
‘Every step hurts. I got used to ignoring the pain, brace myself and count the steps I take: 1, 2, 3, 4… 1, 2, 3, 4…
From Soe’s website
‘At the beginning of 2004 I got my first wheelchair, to use at home and at school. In October of the same year I got a mobility scooter for longer distances, because I had grown too big for my little electric tricycle. It could not get me up a hill anymore and ran out of power very quickly. I do not like my scooter, I think it is for old people and makes me look silly, but I do need it for transportation. The speed is limited: even my little sister is faster on her small bike!
I cannot move the wheelchair by myself, because my hands hurt too much if I do that. Therefore I got an electric office chair, to use in class. It looks like a normal chair and is easy to operate. At school I get out of my mobility scooter and on to the chair, to get me where I want.’