Heather’s story and the story of the Pink Disease Support Group………

 

My name is Heather Thiele (nee Kemp) and I was born on 11th June 1949, the first born of twins. I was born at Bacchus Marsh Victoria, Australia. I weighed 6lbs 3oz at birth and was a healthy, thriving baby, until I reached the age of nine months, when I started to teeth. I had rather large teeth and was suffering with cutting them. To soothe my gums and relieve my distress, my mother used the commonly used teething (or soothing as they were also known as) powders readily available over the counter in corner stores and chemists throughout the country of Australia, and other English speaking countries at the time. These were sold in little paper wrappers, and were advertised at the time in women’s magazines as “guaranteed harmless”. (I have copies of such magazines.) The teething powder was rubbed on the gums or the tongue of the suffering infant. My mother used Steedman’s brand, but other available brands were Fishers, Bayley’s and Ashton’s & Parson’s.

 

Immediately, I became lethargic, sensitive to noise, light and touch, lost my appetite and consequently lost weight alarmingly. My mother carried me on a pillow, because I would scream if she touched me. She put blankets at the windows and would only take me outside at night. I lost muscle tone and I found it hard to hold my head up or sit, and although I was on the verge of walking, I became like a floppy doll. The skin on the soles of my feet and palms of my hands became bright pink and began to peel off. I started to chew at my hands, so my mother made me cotton mittens to cover them. I could not tolerate anything woolen or rough in my clothing. My mother started dressing me in my older brother’s bigger shirts used as “nightgowns”, so that my fitted clothes did not irritate me. I would scream if placed in a bath, so my mother started “washing” me with olive oil and cotton wool. I would rock myself from side to side in my pram or cot, and bashed my head against the walls. Nothing seemed to pacify me, and I would go for days without sleep. My mother says my cry was more like the whimper of a frightened animal, and could last for periods of 24 hours or more, without a break.  My hands turned “puffy” and it was this edema, along with the photophobia and pink extremities, that the doctor used to diagnose the condition as “pink disease”. He said the symptoms were too classic and dramatic to suggest any other diagnosis. The medical professionals of the time knew a name for this condition (medical term being acrodynia), but did not know the cause or treatment.

 

I started to convulse and developed pneumonia regularly. I would recover from one bout to go down with another. I had to be half sat up with pillows all the time to drain my chest of fluid. Many a time the doctor would visit in the morning and comment that he did not think I’d survive the night. He gave my mother little hope for my survival, as so many babies with these symptoms were dying in the district. He treated 19 babies in the area over some months, and I was the only one to live. Many of the babies seemed to get worse in hospital, so he encouraged my mother to nurse me at home. My mother was determined to “pull me through”. I am convinced I am alive today only because of my mother’s dedicated nursing. She had my twin brother and three older children to raise at the time. The doctor suggested to my mother that she give me a dummy (or pacifier) for me to suck on. She had not used one before with her three older children and she found I would suck the medicine or a little liquid glucose off the dummy if it were offered. At one stage, the only food I would eat was a half-set jelly (jello). Of course, I lost weight alarmingly. I looked like a little skinned rabbit, according to my older sister. 

 

Unbeknown to my mother at the time, was the fact that the cause of the pink disease was the calomel, mercurous chloride, used in the powders as a preservative. Steedman’s powders contained up to 23% by weight of this form of mercury compound. When she was told this many years later, she was horrified that I suffered this condition and its life long effects from something she had given me. I have documented cases of mothers denying they used the powders on their children, and later on admitting that they may have used one or two. It is a very sad part of our story that these parents have had to live with the guilt of using the powders. Some families have been torn apart from this knowledge with children not being able to forgive their parents for doing this.

 

Word reached the family doctor that a doctor in South Australia had discovered that the pink disease babies were showing a lack of salt in their bodies and recommended a treatment of adding salt to the diet for the pink disease babies. This proved to be not the cause, but one of the symptoms, and the doctor was Dr. Donald Brooke Cheek. I was to contact him in the months before his death from cancer in 1990, and he was pleased that I was doing the work for the pink disease “babies’ in the form of the support group. In the early 1950’s the work of Dr. Joseph Warkany of the USA proved that the cause of the pink disease was the calomel in the teething powders and with Dr. Cheek’s encouragement, the powders were withdrawn from the market in Australia and the United Kingdom. I have copies of the legislation from each of the states of Australia to ban the use of the mercury compound in the powders. Western Australia was the last to legislate in 1956, but the mercury-powders were still sold in stores for many years after this. I have copies of advertisements for them “without the harmful calomel” from magazines in 1959. Once the powders were withdrawn from sale, the incidence of pink disease stopped immediately. It is not heard of now. I have a Sydney newspaper, which published a warning not to use the powders containing the calomel from July 1st 1874, following the death of a baby with pink disease. Yet it took another 80 years for the incidence of pink disease to stop. It is a shame so many hundreds, even thousands, of babies had to suffer and die because of slow action by the medical profession. I have documented cases of a family having 5 of their 10 children die from suffering pink disease, and many cases of two or three babies in the one family dying. Plus you have to consider the effects that having suffered such a horrific form of mercury poisoning at such an early age in life has had on each and every pink disease sufferer and their families. But, I am getting “ahead of myself now”.

 

My mother added salt to my diet, often giving me some on a plate, which I readily stuck my finger in and licked off my hands. Many pink disease sufferers have told me they used to eat salt by the handful, if allowed. I have researched since that mercury does deplete sodium in the body. I was also given vegemite (yeast extract) in a broth, which was not only a source of salt, but also a rich source of vitamin B, which treated the nerve damage of the mercury. The doctor also prescribed a “grey powder” which was mixed in honey and water as a treatment. In those days (1950) a patient did not question what a medication was, and many pink disease sufferers were given treatment or tonics that they did not know the particulars were at the time. Babies were put into hospitals and the parents weren’t allowed to visit even. Many were used as “guinea pigs” in treatment. The doctors at the time did not know the cause, treatment or history of pink disease.

 

At the age of 18 months, when I was slowly recovering and starting to catch up with my twin brother in my physical skills, our family moved to the town of Eildon, where my father was working on the building of the huge Eildon Weir. There was no town as yet, and my family was living in sparse conditions in a tent. I became ill again. The doctor treating me offered penicillin as a treatment. I was given needles of this every second day. My mother used to walk through the icy waters of the Eildon River up to her waist to take me to the doctor’s facility, one of the few buildings in the town.

 

Eventually, I began to recover, although I was unwell until I was 7 years of age, when our family moved to the warmer climate of Queensland. I can remember the terrible nightmares I had until this time and being very tired all the time. I was particularly clumsy and very shy as a child. I would sit in the corner of a room, reading a book or playing, and be quite unaware of all that was going on around me. (Not a mean feat when you think that by this time, I had another two brothers, also twins, and baby sister, making our family of 10.) I did well at school only because I used to study so hard at all I did. As I write this in June 2001, I can say that I have always lacked spatial judgment and fine motor skills. I have trouble judging “how much of this would fit into this”, doing up things like locks, seat belts, jewelry clasps, double clicking my computer mouse etc. I always say that I do everything in life twice: firstly, the wrong way and secondly, the right way!

 

During my illness and early childhood, my mother was told that I would not live to reach school age (around 5 years of age), that I would not live to adulthood, that if I did manage to live I would be sterile etc. She was in constant fear that I would relapse at any time. I have records of pink disease sufferers who were told that their hair would fall out when they reached 14, that they would be sterile and many other horrific things. The sterility claim was not far off the mark as mercury damages the cilia in both female and male genital tracks. Young’s Syndrome in men has sterility as one of its symptoms. I had no difficulty falling pregnant at age 18, but could not conceive naturally after that until 10 years later, and have two healthy children. Because of our family incidence of twins, I was reluctant to seek any fertility treatment.

 

I suffered pneumonia bronchitis and asthma in April 1952 (34 months of age) and nearly died. I suffered severe measles in March 1953 and chicken pox on both my 1st and 2ndbirthdays. The second dose was very severe. I suffered German measles in October 1952, and had constant bouts of pneumonia. I suffered pneumonia on my 3rd, 4th and 5thbirthdays. My mother had begun to dread my birthdays! I am amazed that I never developed bronchiectasis, as over 23% of pink disease sufferers did. I must have had amazingly strong lungs. I have never smoked in adulthood, nor drank alcohol. I have always led a healthy life preferring natural foods to processed ones.

 

In recent months I have studied the effects of another form of mercury sensitivity/poisoning in the autism spectrum disorders children who had thiomersal in childhood vaccinations, and I have been interested and alarmed at our similarities in symptoms. I can relate to their inability to make eye contact when talking to people (I can remember being yelled at by a teacher when I was 8 years of age: “Look at me when I talk to you, you ignorant child”). I can relate to their feeling of detachment from what is happening around them. I have often felt as if I was on the “outside of life looking in.” I can relate to their sensitivity to touch, noise and light. I have severe pain especially around my ribs in the connective tissue (costal chrondritis) and cannot bear to be hugged by anyone. If I bump my leg against a piece of furniture, it really pains for days afterwards.

 

I have no sense of direction or position. If I park my car, it doesn’t end up anywhere near where it should be. I have a rope hanging down from the carport roof to show where I should park the car, but still can’t get it right! My husband gets so frustrated with me.

 

I go around turning down the sound on the TV and turning off lights in the house. As a child, my father would yell at me sitting as he thought it was “in the dark” reading. He would tell me I’d send myself blind! Even now, I own a coffee lounge with a bright fluorescent light over the stove as well as a light in the ceiling and I turn off the stove light as soon as I am in the shop on my own every afternoon. I often wear my tinted glasses inside of a day to stop the glare. When I have my field vision tests on my eyes, my ophthalmologist tells me he can see the scarring on my retinas, which indicates heavy metal damage.

 

I can feel nauseated when I am in a crowd of people, or if I am in a group of screaming children at a party e.g. I still rock myself when I am distressed or worried. I have definite patterns of repetition and order in many things that I do. Sometimes I wonder if these are more of a survival mechanism than an actual symptom of a disorder. I am so used to thinking out in advance the easiest way to do things so that I don’t do mistakes, that I have quite a reputation for being very organized.  The same people and friends, who compliment me for being organized in my life and ways, don’t appreciate that this is the ONLY way I can cope with life! I have maintained a rather stubborn streak in my personality and a good sense of humour which both help at times!

 

When I go to type out words, they get mixed up. “That” is typed as “hatt” for example. I am OK is I write by hand. I cannot do things like shuffle cards, do up seat belts, do up jewelry clasps or locks etc. When I am interrupted in a task or speech, I lose all track of where I was up to before the interruption. I find it hard to remember books and articles I have just read. I have to make notes and go back to the article time and time again to remember the basic thoughts of the article. However, I am marvelous at remembering dates. I am terrible at remembering people’s names and faces. Recently, I was with my daughter and kept calling her by my grand-daughter’s name, and telling her to put something into the car when I meant shopping basket. I recently saw a program on TV about the recognition of faces. It discussed how certain people with brain damage could not recognize even familiar faces after car accidents etc. It was the part of the brain that connected current faces with a memory of a face, before the accident that was damaged. I thought at the time that this is what I have problems with. The medical term is prosopagnosia or face blindness.

 

Some of my problems seem to “come and go” in intensity, but I notice they are worse when I am stressed. I own a café, and when we get busy I have to literally “check” myself and “go down a gear” in my actions, and really concentrate on taking orders etc. I will take an order down as three black coffees and one white, when it should be the other way around. I constantly have to double check orders so that I don’t make mistakes. Both my husband of many years and my staff get very cranky with me when I make mistakes, and this adds to my frustration. I think pink disease people must be very frustrating to live with. I have noticed many of us have had more than one marriage and many are now divorced and living on their own. I know I prefer my own company than being with a crowd or even a couple of people.

 

I also have no strength in my arms, when holding things above my shoulders, or stacking things onto shelves. I am a hopeless swimmer for this reason. This seems to be common amongst pink disease people.

 

Another thing I have noticed is that I have had what I might describe as “hot flushes” all my life. Even as a child when I made a mistake or was embarrassed, I’d flush in the face and come out in a hot flush over my body. I have never been good at speaking in front of an audience or being the centre of attention. I do not self promote myself. I find I do not attempt to do some things, like fill sauce bottles in my shop, as I know I will spill the sauce and waste it. I go and do something else that I am good at instead. Sometimes I do things, like a jig saw puzzle or cross-stitch, just to prove to myself that I can do it. In spite of all this, I feel I have a good self-esteem, in that I know now why I make mistakes and have accidents etc, whereas I consider some other people rather ignorant of their shortcomings. At least I have an excuse!

 

At this stage let me state that I am not medically qualified in any manner. I am not even a nurse. I am simply a victim of mercury poisoning, who has been looking for answers most of her life. Because our condition is not obvious, we are forgotten, ignored and dismissed, even by our closest family members, but especially by the medical profession. We do not have any obvious signs of our disabilities, and look quite “normal”. Most of us seem to be rather determined, intelligent and hard working, so we do not draw attention to the daily struggle we have to function in this world. The only signs I have physically of having pink disease are the strongly rigged finger nails and skin pigmentation around my neck as if I have a rash. Others really have to spend a day or so with me to see that I do have problems performing normal every day tasks. I will go to open a door and have to take two or three attempts to grab the door knob etc. Or I will go to place a plate on a shelf, and miss the shelf completely, grazing my knuckles. I often have bruises on my body from bumping into things and I don’t remember doing it.

 

I have mentioned only the things I do not have in common with other members of my family, as I do appreciate that some things, like a tendency to suffer arthritis, are genetic. I am one of eight children and have a large extended family. No other members of my family have the problems and issues I have mentioned.

 

In 1989, I started to investigate the possibility that there may be other pink disease sufferers left alive in Australia. I had never met another survivor in my life until then, and often wondered if my mother was really telling the truth about it all. If I mentioned it to a younger doctor, he would say “no, never heard of that one”. It was not in any of the modern baby health books. When I would go horse riding, my feet would go numb and I had always had all these other things happening, like drifting when I walked, stumbling, getting things back to front when I typed etc.

 

I went to one doctor, who told me I was “menopausal and to get in and do a decent day’s work.” This was at a time that I was working a 10 hour day in our family business (as I still do). He accused me of being a hypochondriac. I was devastated, and went into my shell a bit further emotionally. I then had occasion to attend another doctor for an accident I had had, due to my clumsiness, and I mentioned pink disease. He casually said, “Yes, that was such a terrible thing. So many babies died and so many left with problems. You know it was mercury poisoning, don’t you?” I literally burst into tears of relief there and then!

 

I wrote a small two line letter to a popular Women’s magazine in Australia, the New Idea, asking if there were any other pink disease “people” out there. I thought I might get about 6 letters back. Within weeks, I had over 200 people write to me. The magazine was amazed at the response. Many of the people thought they were the only one left alive inAustralia, as I had. I had people ring me up in tears. From that first letter, I formed a support group with my own funding and in my “spare” time. It grew to over 2,000 noted cases, varying from one line “I had pink disease in 1944, and nearly died”, to detailed letters and tapes. During 1999, I realized that the support group had taken over my life. My family life, finances and personal energy were all badly affected. I had spent thousands of dollars of my personal money on the project and felt guilty that my family had not benefited from this. I am of rather humble finances and had even put myself into debt over it all. I decided to give up the work, and wrote to the over 800 people I had been mainly the free newsletter to advise them so. One of our members offered to set up a web page and continue on in a small way with email newsletters, but was unable to do the postal ones.

 

A reporter from a Sydney newspaper wished to do a story on why I had to give up the work. She thought that by doing so, some medical body may “take on” our cause. This did not happen, of course, and all I achieved was to find a further 130 “new” pink disease people to add to my list! But, the reporter discovered Sallie Bernard of the Coalition for SAFE MINDS as a person of “interest”. From there, we have established a working relationship, by email and post.

 

The other member, who was maintaining the website and following up on a health survey she had compiled some years previous, Diane Farnsworth suggested that she and I could do the support group together, and thus share the workload. We decided to charge a small annual fee for membership to cover the newsletter costs as from January 2001. I am handling this money as treasurer.  

 

Diane has now taken over the majority of the workload and is doing the co-ordination of the group including the newsletters, continuing on with research and maintaining the website. We are currently only posting out the postal newsletters and updates to financial members, and this has dropped the number down to just under 300 members. I have kept all records of non financial members, along with those who have died at the time or since, moved address or stopped being interested in the group for some reason. I have over 2,000 noted cases in Australia altogether.

 

I had terrible teeth, which, when they finally erupted were black and crumbly in the gums. I had them taken out and never filled, they were so bad. I am grateful for this, as I have never had a mercury/amalgam filling in my mouth because of this! I had a full set of dentures by age 16. Many other pink disease people had excessive cavities and gum/teeth disorders. I had gingivitis when I had the pink disease also. The scenario of having suffered pink disease followed by another mercury exposure in amalgam fillings horrifies me! Many pink disease people have had their amalgams removed and replaced, with an improvement in health (once they realized what caused pink disease).

 

Many pink disease people did not know it was mercury poisoning/sensitivity until I told them. I did not know until 1989, myself. The doctors at the time did not know while we had pink disease and when they did realize, did not inform anyone. They just stopped putting the calomel in the powders! The powders themselves were not legally banned, so this has made it impossible for us to get any sort of compensation.

 

We are also terrible “form filler inners”. We tend to put things in the wrong place when filling in forms, which is getting to be a more frequent problem in this world. I even signed my wedding certificate in the wrong place. I notice that every second membership form filled in by support group members has a mistake on it.

 

I also have bad skin reactions (itching and burning sensation and red flare in skin) to many chemicals and cosmetics. I cannot wear eye shadow or makeup as my skin actually blisters. I find I do not use any perfumes, make ups, medications etc without checking for any form of mercury. I check every medication I can for mercury. Recently, I was prescribed eye drops by my doctor who knows I have a mercury sensitivity only to find the preservative was mercuric nitrate!

 

I suffered from bad migraine headaches from 1974 until 1989. I put them down to stress or hormonal changes. Then I realized I got them whenever I was involved with the horses outside for daylong periods (when I went with my husband to a horse endurance ride, or went to pony club with my children). I then also realized that my hat was an Akubra brand, when is made of felt, which in turn is made from rabbit skin fur being soaked in mercurous oxide! I gave the hat away, bought a straw hat, and have never had a migraine since!

 

I honestly feel I have angels looking after me, as I have often had incidences where I have avoided mercury. When I was 16 years old, my parents told me that I could leave school, if I could get a job. I applied for many, including one as a dental nurse, which would have involved grinding the mercury/amalgams in a bowl by hand (without any protection in those days). I did not get that position, and it was not until 1989, that I realized the implications if I had! Then in 1977, we were thinking of buying a business in town, the dry cleaning business. The owner changed his mind to sell to us, and the couple he ended up selling it to both ended up with health problems from the chemicals used.

 

Over the years, I have tried to get medical and government organizations interested in our case, to no avail. I have literally boxes of copies of letters I have sent out to such people, with many of them remaining not answered. It appears to me that most people consider the pink disease story as something that children “got” years ago, like measles, and it had no long-term effects. It is a long forgotten story to everyone but the people who suffered it or maybe a parent who watched a child fade away from the condition or its complications.

 

I have letters from mothers whose babies died with pink disease in hospital and they weren’t even told where the baby’s body went. These parents have grieved all their lives for these children. Many mothers in particular, as it was often the mothers who nursed the babies in those days (first half of last century), still talk of the terrible struggle they had to bring their babies through pink disease or the heartbreak they suffered when their babies died. The doctors at the time did not know the cause and many mothers were told it was a venereal disease their husbands brought back from the wars, or the baby was “spoilt” or they were overanxious. Many parents had their first baby suffering pink disease and were so traumatized; they did not have any other children! And then there is the guilt many mothers feel on learning it was the teething powders that caused pink disease. My own mother felt guilty till the day she died, but was also proud of the work I have done for the pink disease people and continue to do in her honour.

 

In recent years I have increasingly become involved in the autism issue. Many symptoms of autism are similar to those of pink disease or mercury poisoning. Some cases of autism in the USA in particular have been attributed to the mercury laden childhood vaccinations the autistic child had. The story of the denial that pink disease was caused by the mercury in the teething powders by professionals in the first half of the 20th century is identical to that of the denial that autism can be caused by the mercury in the vaccines in the latter part of the 20th and early part of this new century.

 

David Kirby, health reporter for the New York Times, has written a book “Evidence of Harm” in which he analyses this dual story. He refers to my personal case of pink disease on page 63 of this book.

 

Many other organizations and scientists are now comparing the two forms of mercury poisoning. I was asked in 2001 to submit a submission to the USA senate’s thiomersal review committee detailing our story. I feel strongly that the rise in autism throughout the western world parallels the increase in the amount of mercury in the vaccines for babies and children. The number of vaccines has increased from 4 to 22 in the past ten years, increasing the mercury exposure.

 

I keep lobbying against mercury “in anything”. Recently I initiated a mercury/fluorescent tube recycling program in my home town. I was one of many who lobbied our Australian government to implement a mercury free childhood vaccination program since 2001.

 

One thing I have learnt to do is to not use the term “pink disease” or acrodynia, the correct medical term, for my condition when discussing it with others. I now say I had “a form of mercury poisoning”, as I find people now can relate to that better.

 

I have learnt my capabilities in life and stick to those things. I’d rather do something I know I can do well, than try new things. I will continue to endeavour to educate all that “should know better” about the long forgotten pink disease children and what we have endured. I feel strongly that I was meant to survive so I can make this my “purpose in life”.

 

I appreciate all the work Diane Farnsworth has given to keep our support group going. Without her guidance and work in the past 7 years or so, the group would have ceased to exist in the last days of the 1900’s when the work became far too much for me to carry on with.

 

 

Heather Thiele (nee Kemp)