Looking For Your Synovial Sarcoma Survivor Stories!

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Dear Synovial Sarcoma Survivors Support Member,

For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases.

But it’s not enough. We would like more people to know about this wonderful service.

To that effect, we are planning a social media campaign that will highlight the benefits of the Ben’s Friends online communities. We would like this to come directly from you, our members, to ensure the information is authentic and speaks directly to the reader.

So…we are inviting you to share with us your feedback on the platform, what makes it special, how it’s helped you, why you use it, and why others should as well.

Important note: our social media posts will be edited to avoid sharing any personal information, but will be 100% inspired by and representative of your stories.

If you are interested in contributing, please send your story as an email to bf.stories@bensfriends.org.

Note: by sending your story via email, you give Ben’s Friends consent to leverage some of its contents to create its social media posts, provided no patient privacy information is divulged.

Thank you,

Ben’s Friends Rare Disease Communities

BensFriends.org

SS discovered 10 years ago in right upper arm. 66mm . I felt pain for at least 3 years until I could not sleep. Doctor sent me for an Xray . The Xray did not show up the tumour and they said all ok. I went back again and he referred me to a specialist sarcoma centre. I had an ultrasound and immediately the doctor said that they could see a mass. I had an MRI and then a biopsy. All this happened within a week. I was then broken the news that I had an aggressive SS grade 2. My wife fainted. Doctor said they need to blitz with radiation then remove. That was 10 years ago. I have yearly check ups. You never really think everything is rosy because SS is such a nasty cancer but I am a survivor but still take one day at a time. I never want to get cocky. This is just to say that there is hope. Any questions please let me know
John

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