Sticky Blood-Hughes Syndrome Support

How can you receive adequate care, if all avenues are blocked!?

Having moved out of London ten year's ago, two illnesses diagnosed, after the birth of my youngest child, (sjgroens and psoriatic arthropathy),however despite having had DVT's 22 year's ago, no diagnosis for Hughes, until recently, due to being 'seronegative'.

Myself and children were lucky enough to use St Thomas' Hospital for 18 years, now we as a family find ourselves in a very dangerous situation., having worked out that myself and my extended family have Hughes, and to have found the right person to correctly diagnosis this, despite letters written, still we are stuck, not being referred back to St Thomas' and also local attitudes colluding to say that we do not need to be referred there, disbelief that perhaps my middle child needs asprin, (full migraine every day and dizziness), also my youngest, a migraine which lasted 24 7 for 15 months and 4 days, causing dizziness, and black outs and dead legs. They now have two migraines a month. Also in other child HSP with funny platelet readings and also unexplained kidney problems when much younger, not withstanding their drug reactions at times, also mycoplasma for 6 months and three months respectively.

We are as a family most nervous, the attitudes towards extreme stomach pain, (probably stomach migraine), when sent to casualty, also similar with scarlet fever, makes us wish to bypass the local PCT, if however St Thomas provided some sort of umbrella for us with this condition, for myself and possibly the children, it would have the knock on effect of bringing local services into line.

The institutional defence and zealous gate keeping is making things very dangerous and stressful for our family. We have no private medical insurance and I work unpaid, part time due to unreliable health issues.


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