I hope you can spare a minute to read my son’s story and support as much as you can.
My son was diagnosed with Cholesteatoma in April 21. He had mastoid surgery in Oct 21. Due to its severity, his hearing bones were removed as it had eaten into them and the mastoid bone surrounding his ear. He is now permanently deaf in one ear. He will at some stage require a further operation to check that the cholesteatoma has all gone. Not many people even know what cholesteatoma is. It is often misdiagnosed as an ear infection.
The only way to treat cholesteatoma is through surgery, and there are very few surgeons that specialise in this area. The sheer size of the cyst can impact the nerves in your face, leading to facial weakness, paralysis, brain abscesses, and meningitis.
I have created a UK Government and Parliament petition which has been approved.
The petition I have created is to ask the Government the following:
Review and fund improvements in diagnosis and treatment of cholesteatoma
The Government should:
- Review how cholesteatoma is diagnosed and treated on the NHS
- Increase funding to help improve treatment
- Run a campaign to raise public awareness of the condition
A petition such as this has never been created before and has never gone to Government. I want to ensure it does and therefore, below is a link to the petition.
https://petition.parliament.uk/petitions/599266
I would be so grateful if you would sign the petition and also share the link with your friends, family and colleagues as much as you can so it goes far and wide!
At 10,000 signatures, government will respond to this petition
At 100,000 signatures, this petition will be considered for debate in Parliament
This isn’t so much about my son. This is about creating an awareness of the disease and the affect it can have on peoples lives. I have read so many stories of what children and parents are going through, so the more signatures we can get the more people we can help who have this horrible disease.
Thank you everyone 🙏
I am in the United States, in about 1987 my daughter went to have tubes placed in her ear drums due to repeat ear infections. This procedure had been done to her multiples time causing scarring on her ear drum. In trying to find a place to make incision for tubes the doctor nicked her main artery. She almost bled to death but the doctor finally got enough packing to stop flow of blood. She was transferred to a larger hospital for further treatment by otolaryngologist. She did recover but had to return due to having a cholesteatoma which required surgery to fix the problem. She did lose the hearing in this ear but since the surgery has had no further problems.
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