What if??

What if??

Just had a call off my sister to be told my 1/2 brother's wife's daughter has just died from a clot :O you can but imagine what is now going through my mind....is it.....was it!! she was 43!!! a year older than me :( how sad.

What if this is another case of it could have been & it could have been prevented if caught in time!!! I am so angry & upet at the same time!!!!!

I know it doesn't necessarilly mean she could have had Hughes................but what if?

I have re - phoned my MP too just as I am sick of being given the run around & she is making me an appointment in September to get the piece in the local papers.........at last!!!

People have to know of the early symptoms so they can help themselves & be tested if they think they may have it.......I'm so sick of the ignorance of people that could help & even some docs & upset of what Hughes can cause if not dealt with in time...............

11 Replies

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  • Hi, there, sorry for brief reply, (currently camping)... sorry about your family dilemma and I would be probably thinking the same... we do tend to have to become family detectives... I know I have. Sending you the best wishes xxx Mary F x

  • Im so sorry to hear your news Suzy. It must be so upsetting for you all. It is so frustrating when we are forced to become our own Doctors when they are paid to do that work for us.

    Perhaps it was not Hughes but still a very tragic thing to happen. Thinking of you all.

    Hugs xx

  • Thank you huns, I never got to know her either which I feel is sad too, as there was family probs earlier on in life that seemed to split my 1/2 family up from us, it's only as we all got older we started to get in touch again ( they were the children from my Dad's 1st marriage) then my 1/2 brother re-married I never got chance to get to know her side only his wife recently.......... I feel so sad for her, to lose your child before you like that cant be easy :(

    It doesn't stop it being sad tho' as I feel like if I'd known her could she have had other symptoms I could have picked up & helped her?? I know I shouldn't be beating myself up with this....plus it may not even have been Hughes related??

    I just keep hearing all around me of people dying early from clots, heart attacks etc & just keep wondering.....& now it's getting nearer & nearer to me & it just makes me wonder...what if.....could it have been prevented..........I'm sorry for my ranting, I'm just angry I suppose at the possibility of someone maybe could have been helping her :(

  • So very sorry to hear of your loss, my condolences to you and your family. You are right, we need to fight on!!!!!

  • hay Beautiful- so sorry to hear this horrible news ! my thought's are with you and all yours in this most difficult times--- i'm here if you need me --- jet

  • Hi Suzy

    So sorry hon, what a tragedy, I feel for you all, as you say what if? I feel your frustration and anger hon. I hope that one day doctors will test and prevent so much grief, her poor mum and dad, I can't begin to imagine losing any of my children.

    Sending very gentle hugs and love to you and yours Sheena xxxxxx :-) :-) :-)

  • So sorry to hear this awful news Suzy. I think we are all so sensitive to this sort of thing as we all know it could have happened to any of us if we hadn't been diagnosed and even if we have.

    I had appointment with physio yesterday and gave her some info on Hughes. She said she had just referred a patient back to GP because she suspected that they had MS, I pointed out the symptoms could be very similar and that in all likely hood she will be seeing patients with Hughes.

    She was really good as when she received my referral she had looked up Hughes, we need more like her.

    Take care pal x

  • Thank you all, yes we do need more professionals to know about Hughes so they can pick up on it sooner....we also heard today that hubby's sister's boyfriend has been having sight problems & couldn't feel his face or talk for a while?!! They have apparently now just left him!?? Surely they should be giving him a mri to see if its a stroke at least? What if that too is Hughes?? I feel as if its following me! Hugs & love to you all in my Hughie family xx

  • So sorry to read your shocking news Suzy. Makes you think!!!!!

    We must all help to promote awarness of this blooming illness.

    Take care.

    Garry

  • Very very sorry to hear about your loss, it is frustrating and tragic when you think about it all and wonder if something should have been spotted? my own experience is that four months before my clots were diagnosed I had severe eye problems, one eye was so bloodshot and lumpy that even the eye clinic couldn't work it out. I now know that this was possibly symptomatic of Hughes and the same eye is now much weaker and constantly erupts with conjuctivitis type problems. I don't think any of us should dismiss or accept changes in our body and self diagnose which is another thing I seem to have done for years as medics seemed to be unhelpful. Condolences and best wishes to you xx

  • So sorry to read this. My condolences.

    I look forward to the day when more is known about the mechanism for acquiring Hughes and the Syndrome becomes then re-classed as a disease. At that point I believe more docs will be on board with the actual frequency of our " rare" condition.

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