my name is elly iam from watford i have lfs

[PanP]

Hi Elly. Definitely not alone. Sounds like your family have really been through it. Happy your sister doesn’t have LFS – have other members of your family been tested?

[ELLY]

my mum but she is clear its from my dads side my sister is 66 and has not had the test and her children have not been tested

[ELLY]

i mean my dads sister sorry

[ELLY]

we have now found out my son has lfs he is only 6 but thankgoodness he is well

[PanP]

oh Elly I’m so sorry to hear that, but it’s good that he’s well. Have they mentioned anything about screening for you both? Are you being seen at the Marsden or somewhere else?

[ELLY]

hi my son leo has 6 month check ups at watford genral and iam under three different hospitals i have breast check ups every year i have a whole bodt mri scan and a skin specialist check me over every year and i go to the royal orthopedic hospital x

[sandra_may]

Hi Elly, I hope you are well. I’m so sorry to hear about your losses and that you and your little boy have LFS. I know how hard it is having children with LFS, 3 of my children have it, so far only one of them has been poorly but he has been off treatment for almost three years now which is great. It is good to hear that you are both getting some kind of screening and fantastic that you are getting full body MRI’s, I’m trying at the moment to get more screening arranged for me and my children. I’m glad that you’ve found this forum as like you said its good to know you are not alone in this. Xx

[Author]

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