I was born February 19., 1957, in Denmark. My Mom had some food allergies and arhtritis. My Dad was born and raised in Indonesia, where he lived on a rubber plantation, where they used pesticieds and other chemicals.
Shortly after I was born I showed signs of – later diagnosed with – non-specific asthma, non-specific allergies, atopic dermatitis and a not fully developed immune system. I was born with 11 fingers.
As a child when I got sick, and got really sick. Sick from the illness and sick because my body couldn’t handle the illness.
As soon as I was diagnosed with asthma and allergy to dust mites, I was started on shots to be desensibilized. It didn’t work as expected. I reacted badly to the shots – my arms, where I had the injection, swelled up to duble size. My doctor had to minimize the doze, and split in half – so I was in treatment until shortly before I started in school.
I had many sick leaves in school. One year I had 43 days of sickness – a lot for a school year. But luckely for me I had a good head and did good in shool, so I always moved up to the next class.
I ended school after 10. grade with good grades.
At the age of apx. 20, I got severe rashed/plaques. Went to my doctor, and i was sent to a skin doctor. He thought I had para psoriasis, and was treated asccordingly. It didn’t get better. After quite a while, I asked to be transfered to Finsern (a cancer hospital).
I was in 1978 diagnosed with Mycosis Fungoides stage II – and was told it was a skin disease. I should undergo some light therapy – PUVA – 4 times a week. I lasted for apx. 1 year, then I turned more than really sick from the treatment. At that time I worked in a computer/office machine company.
When I was diagnosed, I had a plaque the size of a dinner plate on the front of my chest. I had plaques in my arm pits and between some of my fingers. I was told, I was the youngest with the illness in Denmark, and therefor I gave a lot of blod- and skin tests.
After I turned sick from the PUVA treatment (which contained of taking a pill – Psoralen – and then get exposed to UVA-light). I got radiation on my acvtive plaques.
After I was looked after for apx 12 years, I was released form the hospital, but said that if I it ever flaired up, I should return.
This was in 1990/91.
In 1992 I got very sick, couldn’t work – I was in a really bad sate of health, and I had to stop working.
Shortly after – in the Autumn – I started to learn about MCS (Multiple Chemical Sensitivity) – and joined a News Group for people with MCS.
August 16., 1994, shortly after I came on the Internet, a newsletter dropped into my mailbox from the MCS News Group – the header was MYCOSIS FOUNGOIDES (from now on called MF)! I looked at the header, and then I read the text.
Mildly said – I was shocked. in clear words it said that MF is cancer in the immune system (T-cells).
It took me a couple of days and som boxes of Kleenex to recognize that I was a cancer patient! GOSH!!!
Then I started to look for info about MF. First I called the Danish Cancer Ass. They didn’t know the diagnosis, and therefor they didn’t have information about it. OK! I started to surfe the Internet – and I ended up at National Cancer Institute in USA. O-H M-Y G-O-D!!!!
I downloaded info both for patients and for caregivers. I wanted ALL the info I could get my hands on. I was chocked about the things I learned.
The cancer was incureable!
It is a type of cancer that usually hits middle aged men!
PUVA is also called Photo Chemotherapy – CHEMOTHERAPY!!! I had had chemo!
During my treatments, I had beern wearing goggles – and I had warn them to short time – and I had been dressed wrongly! It was summer, so I wore tank tops – I should have worn long sleeved T-shirts – and I should have worn my goggles all the time there was light outside.
WOW – slowly a lot of answers to questions I had had started to pop up.
I also learned that MCS is an immune defect – OK – MCS and MF hold hands…. LOTS of questions answered.
I searched the Interned thin for information – and when I had enough, I again called the Danish cancer Ass. THIES TIME to offer them all the info I had collected – and that was A LOT!
I spoke with a nice guy – Peter Qvortrup Geisling – who at that time was working there. He wasn’t thrilled the first time I spoke with him – but OK, he would take a glimse on the papers, if I wanted to bring them to him.
Fine by me – I brought the papers, and he called me that same evening. HE WAS STUNNED!! he acted like a kid in a candy store. He was amazed that such valid information could be found on the internet. I was thrilled to have made a difference – not only in my own life, but also in other people’s life, as now they could get the information, they might need.
Then Gulf War Syndrome became a topic in Denmark. I read a story about little Henry. He was born with 3 ears. I instantly came to think about my 11 fingers. Called a bio chemist I know, and asked her about my 11th finger – compared to little Henry with the 3 ears.
Her answer was very clear. My 11th finger is a very ordinary birth defect in a child born by parents, who have been exposed to pesticedes. I instantly thought of my Dad and the rubber plantation.
My most important message here is I AM STILL ALIVE – fort some it looks like a very difficult life with non-specific asthma, non-specific allergies, Multiple Chemical Sensitivity, 2 types of arthritis and a cancer in remission.
Well, I manage! I love my life. I have a wonderful husband – since 1990 – and since 2003 I have lived in a very chemical free environment – and stress is not a factor in my life.
I have had 2 flaire up’s – but didn’t go to the hospital again, as chemo would have killed me! I managed with artificial sun and oceans of lotion – AND chemical free environment and no stress again. As both times it was stress that made it flaire up.
Stress is food for a cancer, no matter what type.
So, live your life, tell the one’s you know that you love them – and… I wise man – Johannes Møllehave – gave me wise words once he gave a speech.
DO ONE GOOD THING FOR YOURSELF EVERY DAY! Your own choice – just do it – and your look at life will change.
These are the words from me for now!