According to the health-worker’s notes, I had my first reaction to foods when I was two months old. In November 1957 - when I was seven months old - I also got eczema. Around my second birthday I began to have problems with false croup, bronchitis, and asthma. Around my third birthday Joergen Lorenzen, an allergy specialist (and founder of Denmark’s Asthma and Allergy Association) discovered that I was allergic to house dust. He prescribed regular treatment consisting of 28 injections. When this treatment stretched over a longer period than expected, it had to be stopped for breaks because I was over-reacting. I ended up needing around 50 injections. That helped but I continued to have problems with my health. So, in the hope of boosting my immune response, Joergen Lorenzen ordered bacteria injections (again around 50) because, as has since been explained to me, I was not just getting sick with the illness itself, but also from being ill. - At one point, in the hope of stabilising my respiratory problems, in among all the other vaccinations, I was vaccinated for asthma. That helped a little but I still fell ill very easily - and that remains the same to-day.

Joergen Lorenzen warned my parents that I would always be delicate - definitely no exaggeration - because the list of things I react to to-day is very long. I have reacted to such substances as paint, turpentine, alcohol and that kind of substance throughout my life - but effectively it became a part of my daily life to have to be careful about what I got close to and also what I ate.

Throughout my school years I was often sick. The same was true when I started my apprenticeship in office life , but I came away from both with great strength of character.

In the mid 1970s I had my small intestine removed surgically. That was a tough blow because it turned out that my intestine was not actually inflamed, but they did find some inflammation outside my large intestine. I never did discover what it was but I have since learned that someone else I know who also has MCS had exactly the same experience. The most amazing part - in my opinion - is that she comes from the same place as my father, that is Indonesia. I really feel that this gives me some food for thought.

In 1977 I began to get large prurient rashes on my upper body. My doctor sent me to a dermatology clinic where I was diagnosed with and treated for para psoriasis. The treatment was no help, so in early 1978 I requested a referral to the Finsen Hospital. There I was given the comprehensive diagnosis of stage 1B Mycosis Fungoides and told that it was a skin disease which might develop into skin cancer if left untreated. THAT WAS ALL I WAS TOLD. I was sent for light therapy known as PUVA (Psoralen UVA). Treatment consisted of taking a small pill two hours before being exposed to controlled, UVA light. The pill (so they told me at the hospital) made me sensitive to light, so I had to wear special protective goggles over my own glasses. I was supposed to keep them on for a certain number of hours after taking the tablets - and that lasted until 1.30. p.m. I went for treatment four times a week for around a year - until one day I became very sick after the treatment. The following day I went to my treating doctor, who took me off the PUVA treatment with immediate effect. Subsequently I had radiotherapy treatment on the rashes when they were active. I was discharged from the hospital in December 1990 with the instruction that if anything reoccurred, I should come back. The 16th of August 1995 marked a major turning point in my life. That was the day I received a newsletter on the MCS newsgroup headed MYCOSIS FUNGOIDES - more commonly known as MF or CTCL, since the disease is also known as Cutaneous T-Cell-Lymphoma. That was the first time I had seen the name of the disease in writing so I rushed to open the mail and see what was in it.

I got the shock of my life - because there I was able to read that this was no minor skin ailment but an immune system cancer, and that what I had been given is called photochemotherapy. On the one hand I was deeply shocked, and over the next couple of days, curled up on the sofa, I went through a couple of boxes of tissues. On the other hand, I suddenly had some answers to a load of questions, because it should come as no surprise that when you have cancer in the immune system, you can become sick as easily as falling off a log.

Before I got this information, I had been on a couple of internet newsgroups for around a year when, through a variety of channels, I discovered that I had the illness known abroad under the name of Multiple Chemical Sensitivity - usually abbreviated to MCS. Through being on this news group, I discovered what MCS is, and how you get it. Suddenly I was able to understand better that even though the list of things that I mentioned reacting to before, was so long, the allergy tests always showed nothing abnormal - BECAUSE MCS CANNOT BE MEASURED WITH ALLERGY TESTS. It is because of my MCS that I wear the mask you can see me with in the picture at the top of the page. If I don’t have it on when I go out, I react when I come into contact with any of the things I am reactive to. Reactions may vary from irritant to irritant - and if there happens to be a mixture of irritants, then the most bizarre things can happen. For instance, reactions might include: severe breathing problems, choking, vomiting, migraine, dizziness, loss of memory, speech difficulties, crying - or a great cocktail of several of them. My own list of reactions is long, but they do vary from person to person. My personal theory is that they are determined by which chemicals caused someone to develop MCS in the first place.

Since MCS is also an immune system disease, when this rather startling information about MF popped up, an incredible number of pieces started to fall into place.

When you get involved in a patients’ organisation, irrespective of which one, you always discover that you need to learn as much as possible about what is wrong with you, because you are then in a better position to manage the symptoms. So I began digging around for facts about MF/CTCL. I needed to know something about it, since I was able to deduce for myself that it must have had a major influence on all my health problems - because once the immune defence is damaged, it becomes unreliable. That was what prompted me to ring the Danish Cancer Campaign (Kraeftens Bekaempelse) to hear what they had on this illness. NOTHING, came the reply. A short time later, when I found a newsgroup for MF patients on the internet, I started gathering information. As soon as I had filled one regular A4 envelope to bursting point I rang the Cancer Campaign, not to ask them what they had, but to offer them what I had collected and anything else I might collect over time. I happened to get a very friendly doctor on the phone and he was interested but reticent because he was sceptical about information coming from the internet. That’s because here in Denmark, many people take the line that the net is primarily a coffee club where any odd person can dole out information. The following day, after the doctor had received the material, he rang me. He was like a little boy whose deepest wish had just been granted. He thanked me long and hard for the incredibly good data I had sent him and he wanted to use it when he produced a booklet on rare cancer syndromes in 1997. We talked about the net, the information people can gather through it, and its reliability. As I said to him, the choice is YOURS which data you consider reliable - and quite honestly, if you are searching for health information, you should look for it in a health, research, or hospital forum and not in a motor-sports newsgroup or swimwear forum. He could see THAT for himself.

Coming back to my MCS, this is what it looks like.

As I explained earlier, from around the age of 8 weeks, I had had problems with foodstuffs, then I got breathing problems and was treated for them, and then there was the immune system problem.

In 1978 - at the time I was starting treatment at the Finsen Hospital, I began working for a computer company. Around that time I had a very large blemish on the middle of my breast, and smaller marks in my armpits, elbows, and between the fingers. I looked ghastly, and they itched, oozed, and sometimes hurt. For most of my ten and a half years in that particular firm, I worked in the technical department - which was in a concrete building with awful indoor air quality. Components often gave off fumes in the workshop, organic solvents were being used to clean various parts, and then there was the photocopier repair department. That was where photocopiers were repaired, then stood and test run for days on end before being returned to the customers. I had my own small office with my own copier, which was used frequently by everyone on my floor. I began to have problems with the cleaning products that were being used, and my general state of health started to deteriorate, and I started having hay fever and asthma symptoms. In the winter of 1983/4, I had inflammation of the lungs and bronchitis three times, one month apart. In the late summer of 1984 I went to the allergy clinic at Frederiksberg Hospital where I was diagnosed with non-allergic asthma and perennial hay fever, and treated with nasal sprays and asthma sprays.

To-day I take 1600 micrograms of Spirocort (2 puffs morning and evening) and a minimum of 2 mg of Bricanyl (2 puffs morning and evening BEFORE the Spirocort) and 1 Singulair each day. If use of my inhaler fails to stabilise my breathing, I have the possibility of taking an injection of 0.5 mg of Bricanyl. Every day during the pollen season, the rest of the year depending on the need, I take daily Rhinocort (nasal inhaler) and one Zyrtec for hay fever. All other medicine, with the exception of Panodil (an over-the-counter painkiller) and Imigran for migraine, is excluded because I get terrible side effects from the medicine (such as rashes, digestive problems, terrible vomiting, dizziness) so the only way I can be treated for my arthritis pains is by steroid/local anaesthesia injections directly into my joints and I get them in my knee, elbow and shoulder joints, about every four to six weeks. This is definitely not the treatment of choice, since the treatment itself breaks down the joints, along with my mobility, but I prefer to have as pain-free an existence as possible, and therefore I have chosen to say thanks for this type of treatment, since I’m definitely not frightened by the idea of sitting around in a wheelchair.

Living with these syndromes (asthma, allergies, MCS, arthritis, cancer) is far from easy and in August 1992 I was forced to give up working. On the 1st of August 1994, I was granted a pension.

From August 1992 until now (1997) I have learned an amazing amount about myself, my illnesses, and how they influence each other, and how I should tackle this complex of interconnected problems - because life is certainly far from problem-free.

Having asthma, hay fever, arthritis and cancer is bad enough, BUT MCS is a whole other ball game. The other illnesses and symptoms are something I can deal with, but to have been forced, effectively, to give up my whole social life, impose very strict rules on the use of fragranced products of whatever sort, not just for me but for Mikael and for the people who have continued to and still feel the urge to come and visit us, THAT is not easy. Once upon a time I was a very active volunteer in the Red Cross First Aid Corps in Copenhagen (which, by the way, is where I met Mikael), I did endurance training, I sang, I cycled, broadly speaking, there were no limits to what I got involved in. To-day I live in near isolation, because I get sick if I go out. I can’t just pop round and visit friends or family because there might just happen to be perfume in the air, or a bouquet of flowers on the hall table. That is why EVERYTHING I do has to be planned, and even then, things can go wrong. For example, I visited my mother in her new flat for the first time. The building is of brick but the stairwell and the floors are of concrete. After I had been there around 30 minutes, EVEN THOUGH I had my portable air purifier on, I was no longer capable of putting my street clothes on. Thinking back to that situation, I now realise that tell-tale symptoms had started just a few minutes after I entered the flat. I was supposed to write a card to my brother but my hands were shaking, as if I had the DTs, and I had problems thinking straight, but I wasn’t really aware of all that. SUDDENLY, with my eyes rolling, I said I want to go home. It felt as if my head was stuffed with cotton wool, as if my ears were plugged, I could not talk coherently, I was choking, and unsteady on my legs. So Mikael threw my outer clothes over me and carried me out into the chilly winter air. This is just one of my stories.

One thing that has struck me over the last year is that since I stopped working, after a period of detoxing, I have stopped throwing up every time I am confronted by the slightest thing. I used to view myself as a Roman champion vomiter, because when I was a child, I threw up almost every night, sometimes several times a night - as an adult it happened at least once a week - and suddenly, when I stopped spending time in chemically polluted environments - the vomiting disappeared instantly like a cloud lifting from the sun.

I have always tended to have major headaches, but when I shared my desk with a laser printer, I began to develop severe migraines with vomiting. I often had to call the night doctor. Now I occasionally get migraines along with my menstruation, and especially if I have had a steroid injection shortly before the start of my period.

I find this terribly funny because I take it as a very clear sign that I have spent time in a very bad environment, because the body doesn’t react like that if everything is the way it should be. The body is a very finely tuned measuring instrument - and you would have to be a great fool not to listen to what your body is telling you. Although I know that now, I had to learn it the hard way, from several years of daily chemical exposures, with the consequence of constant effects.

Through being on the internet, I have found many friends in similar situations, and many of them also have very interesting home pages. That’s why I would encourage you to drop in on some of them. You may have to bring your own coffee, but they are really great when it comes to providing good content-rich information. ENJOY IT.

Thanks for visiting me and I hope you will drop by again from time to time, because whenever anything new pops up, this page will be updated.

Have a really great day, and remember, we all smile in the same language :-))

Warmest wishes

Helle Kongevang

Babies laugh 300 times a day
Adults laugh 15 times a day
What has happened to the remaining 285 ???

A SMILE IS THE HEALTHIEST DRUG - AND IT DOESN'T GIVE YOU ALLERGIES