my name is elly my father died in 1985 when i was 2 years old my brother was 4 weeks old my sister was 4 and my other sister was 6 my fathers mother died of breast cancer when my dad was only little when my oldest sister was seven she developed a muscle cancer in her arm my mum took her to the doctors for a year on and off as she had pain in her arm and swelling doctors didnt do any thing but just prescribed cream we didnt know we had the li framani syndrome then she was finally sent to hospital and was dignosed straight away after having an ultra sound scan on her arm the lump was removed but just kept on coming back the doctors decided tp remove her arm and give her cemopherapy then later on not sure how many years later i think about a year she developed lukimia from the cemo she was very ill then in 1998 april 14th she died from acute shock syndrome from being on a venterlator then in july 2006 i had my son and through out my pregnancy i had a breast lump size of a lemon the midwife said it was blocked milk ducs i had my son in july 2006 went to doctors and said i want a breast scan i was sent tothe hospital had a scan i was dignosed with breast cancer had both breasts removed and reconstrution i have also had a spindle cell sarcoma on my left shoulder had a 8 cm cyist which was not cancer iam glad to say myself son and my other sister went for genetic testing i have the gene and so does my son my sister doent have it my brother was dignoed with a brain tumor in 2010 and died within six weeks of being dignosed my brother didnt want to be tested as he died of a brain tumour we assume he has got it i had another baby boy born in 2014 he will be tested when he is 18 months so in jan 2016 thanks for reading my story
Hi Elly. What a grim story. No matter how many times we see stories like that from people with LFS its’s still a shock to see it written down. All I can say is welcome aboard – you’re among people who know what it’s like to live with this horrible condition.