LIVING WITH EHLERS-DANLOS SYNDROME: Sarah Hamilton's Insights on Diagnosis, Management, and Advocacy for this Rare Disorder

Updated: 13th February 2025

Families whose children suffered serious disabilities or miscarriage after their mothers took an oral pregnancy test prescribed by their GPs have been excluded from the government's review of redress for health scandal victims - against the wishes of the the patient safety commissioner.
A report published on Wednesday by Dr Henrietta Hughes, found a “clear case for redress” for thousands of women and children who suffered “avoidable harm” from the epilepsy treatment sodium valproate and from vaginal mesh implants but government officials did not allow the Primodos campaigners to be included.
Marie Lyon took the oral hormone pregnancy test in 1970. Her daughter was born with a badly deformed arm. But the potential risks of the damage to unborn babies had been raised by medical professionals years earlier.
You can listen to her story here:

This podcast was recorded in October 2023.

EXCLUSIVE. Government commits to reviewing new evidence in Primodos scandal for first time.
Families who believe miscarriages and devastating birth defects were caused by the NHS-prescribed pregnancy test Primados say it's a fantastic positive that the British government has told this programme it is "committed to reviewing all new evidence on hormone pregnancy tests and adverse effects in pregnancy."
The Government and pharmaceutical company Bayer have been accused of bullying the campaigners into silence, by threatening that, unless they commit to never making another claim, they will have to pay the legal bills of the lawyers used to block their joint action.
Marie Lyons took the oral hormone pregnancy test in 1970. Her daughter was born with a badly deformed arm. But the potential risks of the damage to unborn babies had been raised by medical professionals years earlier.
In our enlightening talk with Marie, an advocate from the Association for Children Damaged by Oral Hormone Pregnancy Tests, we trace the timeline of events that began with the introduction of Primados in 1958. We hear Marie's poignant recollections of her daughter Sarah's struggles during her schooling years and in relationships due to her disability.
Marie discusses the Association's High Court battle and how the Government and Bayer filled the court with teams of legal experts, dwarfing their representation.
Fifty years since she started her campaign for justice, Marie remains determined to uncover new evidence to prove her case. We hear statements from the Department of Health and Social Care and Bayer who maintain their denial of any link between HPTS and foetal harm. They were invited to take part in the discussion but declined.
In the final segment of our talk with Marie, we expose the devastating consequences of the drug company's decision to unlawfully distribute the drug in nations where abortion is illegal. Hear Marie's fears for her daughter's future health, the distressing tales of other association members, and the complexities of estimating the number of people affected. As we ponder the heated debate in Parliament and Theresa May's actions post-reading the expert working group's report, Marie stresses the need for an independent review of the MHRA and funding for an independent review of synthetic hormones. Her message is clear and uncompromising: the quest for justice and safety in healthcare is a fight that's far from over.
https://primodos.org/
#Primados
#NHSprescribedpregnancytest
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