#patient-advocacy

#patient-advocacy

In 2019, Jenna Keindel came across a research paper that would change her life. The Canadian, then aged 37, found it through a Facebook group of people affected by limb-girdle muscular dystrophy (LGMD), a condition that causes progressive muscle weakness. Keindel was diagnosed with it when she was 16. The paper suggested that another condition, called anti-HMGCR myopathy, a rare autoimmune disease that causes severe muscle weakness, shared some symptoms with specific subtypes of LGMD and was sometimes misdiagnosed as LGMD.

In May, 11-year-old Nathan Jachimiek's son Ian broke out in a rash. "He's never had anything like this before so this was new for us as parents," said Jachimiek. The couple gave him Benadryl and brought him to the Good Samaritan Emergency Room in San Jose out of an abundance of caution. Jachimiek says a doctor never evaluated his son, they just sort of waited, and while they did, Ian seemed to be getting better. Enough so, that the family tried to leave the ER.

Some families very recently have fed back to me shocking examples of being stigmatised or gaslit - criticised for either being part of the independent review or for campaigning for better services. Families have heard that they are criticised for being in the review, and that they are in the review on the basis that they are seeking compensation. The families tell me that there are instances where they feel they have reason to believe they can trace that back to colleagues that work in NUH.

Tony Henderson, who has kidney failure, criticized the personal independence payments (PIP) system, stating the "tick-box system" does not target the right individuals with needs.

This funding was more than just a financial award-it was a crucial investment in understanding and eventually treating a devastating disease. Advancing research in FD/MAS benefits those living with this rare disease and holds great potential for broader medical applications.

The number one complaint is when other people who are well-meaning and sharing, 'I know what you're going through; my grandmother had cancer and, oh, by the way, she died.'

Chronic migraine is not just a headache; it severely impacts daily life, causing emotional strain and affecting family dynamics. Early intervention is critical.

The doctor prescribed a medication listed on our insurer's published formulary but faced denials at every turn due to incorrect information and bureaucratic obstacles.

Niki Cotson, a mother in chronic pain post-birth, is advocating for North Tees Hospital to be placed in special measures due to alleged poor maternity care.