What is Thalidomide?It all began in Germany 1957, when the chemical company Chemie Grünenthal started to sell a calming medicine by the name of Contergan. It was introduced as a completely harmless, mildly soporific medicine. In Sweden Contergan was sold as Neurosedyn under licence by Astra. It was sold from January 1959 until December 1961.
Depending on which day after conception, the foetus was affected differently. Now, we know that the injuries happen very early in the pregnancy, between days 35-50. At that time, the pregnant women probably don't even know that she is pregnant. The most common injury is malformations or lack of arms and/or legs, but it can also be hearing impairment, deafness, blindness and internal injuries of the heart, kidneys, uterus etc.
At the beginning of the 1960: s about 12.000 children in 48 countries was born with injuries caused by Thalidomide. The medicine was forbidden temporarily from 1962 to 1985. Today, there are 104 people living in Sweden , with injuries caused by Thalidomide.
What is the FfdN?The Thalidomide Association of Sweden, FfdN, is an organization with no affiliations with a political party that campaigns for disabled people's interests. Most of our members today are people with disabilities caused by Thalidomide and their relatives. But, over the years, other groups have joined us, like the double arm amputated and people with other multiple limb disabilities (Dysmelia).
FfdN was founded 1962 by the parents in Scandinavia of the children with Thalidomide related disabilities. There was an urgent need to meet others in the same situation and to exchange experiences and advice.
The first thing or parents had to deal with was to find all the children with Thalidomide disabilities that had been born in Sweden . When they realized that they had found over a hundred children, they decided to sue Astra for compensation. After a four year legal process there was a settlement that gave the children the right to compensation. The health care system was then mobilized. Training, operations, prostheses, aids etc were provided after hard work from the parents. They also fought for their children's rights to access regular schools. At the beginning of the 1980: s, the Thalidomide's themselves took over the association.
A new disaster?
We, who live today with disabilities caused by Thalidomide, never thought that such a dangerous medicine could never be allowed to be used again. But, in 1985, the World Health Organization, WHO, approved Thalidomide again. Today, the medicine is sold as Thalidomide and is being used in over 50 countries. And the use is increasing day by day. The medicine is mostly used in the treatment of leprosy that s a common disease among poor people in developing countries. The control of the medicine is poorly managed. Many women are illiterate and cannot read warning labels. One single pill is enough to cause severe malformations to an unborn child. Sometimes it feels like our troubles in our daily life are nothing compared to the fact that children with the same disabilities as ours are being born in leper colonies in Brazil and other countries.
We, the FfdN are very concerned about the return of Thalidomide, and its increasing use all across the globe. Thalidomide is used in the treatment against an increasing number of severe diseases, AIDS and certain forms of cancer etc. The use of Thalidomide is increasing in Sweden also. The EU will probably approve
thalidomide. If a child is born today, with disabilities caused by Thalidomide, then no one will take the responsibility.
The FfdN does not disapprove of Thalidomide being made available to severely ill people but the control of the medicine must be extremely strict. We wish that the use of Thalidomide would stop completely, but that does not seem to be possible as long as the medicine is helping sick people and cannot be replaced by another medicine without the terrible side effects that Thalidomide has.
Our goal is to do the best we can anyway; try to prevent the birth of more children with Thalidomide-related disabilities. We are trying, together with other Thalidomide-associations around the world, to spread knowledge and information about Thalidomide, its side effects and what it means to live with these disabilities. A small victory is that the WHO does not recommend Thalidomide against Leprosy anymore.