As many of you know, I have been living with Li Fraumeni Syndrome (LFS). It is a rare genetic cancer disorder that predisposes affected individuals to certain cancers over the course of their lifetime. Many, like myself, will be faced with multiple cancers, some even at the same time. Living with LFS can be frightening and isolating. Since the condition is so rare, it is often difficult to find others who share your story. We are a delightfully unique bunch.
I have been bouncing around ideas in that little head of mine to create a LFS group. I would like to hear from individuals with LFS, their affected families and caregivers if they would be interested in such an adventure. Either an online group or a group that meets in person once every month for those in the Toronto/GTA and surrounding areas.
You can either comment on my blog or reach out to me privately through the contact page on my blog and we can chat via email.
Looking forward to hearing from all of you.
Health, love and mutated genes.
xo
Have you joined the LFS group on FB. It’s a very supportive, knowledgable group.
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Hi Mary, yes, I have heard of that group. I was just looking to start something of my own 🙂 Hopefully it will work out!
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You are beautiful,myself being a survivor of large c cell stage two lymphoma,i cannot imagine having cancer as long as you,noone deserves cancer,i wish I could summon an angel from heaven to help
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Hi fellow survivor Daniel! Thank you so much, that is very sweet 🙂
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I was diagnosed with li fraumeni like syndrome. Doctor Raymond Kim is my doctor. I would like to talk to you.
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Hi Luke, it’s great to hear from you! Thank you for contacting me. My personal email is sabrina.fuoco@gmail.com looking forward to hearing from you.
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