EURORDIS Patient Request

[MaryF]

Via HSF/Kate Hindle

Can you help?

The European Organisation for Rare Diseases (EURORDIS) is looking for a patient to represent the community of patients and families affected by Catastrophic APS (CAPS) in a panel of experts. eurordis.org/

This panel of experts will be drawing up draft guidelines which will be developed into best practice treatment for those with CAPS, so it’s important that we patients have a voice there if possible.

The requirements for the patient representative are:

* you have a good command of English

* you have some experience of CAPS/APS

* feel able to advise on patient views and preferences

* are able to travel to Barcelona, Spain on Wednesday 27th April 2016

* can dedicate a few hours to help draw up the guidelines

However there is no need to be an expert – they need a PATIENT’S view not a doctor’s or healthcare professional.

If you’re interested, please contact urgently Juliette Senecat, Health and Social Projects Manager at EURORDIS: [e-mail] / [phone]

MaryF

[disloyalorder]

Thanks for this information Mary, as a CAPS survivor I'd love to get involved - have emailed Juliette.

[MaryF Administrator in reply to disloyalorder]

Great stuff, I have also, if nobody with CAPs wanted to do it, or felt too unwell etc etc, I would collate information off everybody and go.. but hopefully somebody other than me will take this up. MaryF

[lloydyuk]

Hi Mary, I too have emailed but so far it bounced back as 'delayed'.

I saw the initial request via Facebook page.

Will see what happens in the meantime

Danny

[MaryF Administrator in reply to lloydyuk]

I am sure you will get a reply, best of luck. MaryF

[disloyalorder in reply to lloydyuk]

I didn't think there were any other fellow CAPS survivors on here (not really sure how I came to that conclusion...) Hello! Nice to meet you!

[lloydyuk in reply to disloyalorder]

Hiya, nice to meet you too! Yeah I had it 3 years ago, had APS for about 17 years prior. I thought I had flu at first! How did CAPS affect you, being nosy?

I had a cerebellar haemorrhage, kidney infarcts, thrombocytopenia, some form of gastric issue and adrenal gland failure!!

Hope you are well, I have/had a superb consultant I must say.

[disloyalorder in reply to lloydyuk]

It was about 2 years ago and started as a heavy continuous bleeding, then severe anaemia, thrombocytopenia (count 3), seizure, raised ICP, venous sinus thrombosis causing optic nerve damage and total loss of vision. I regained some vision after the clotting was fixed, but the remaining damage is permanent. I'd say though, if it weren't for my eyesight, I am now feeling healthier than I have done for about a decade! You win some, you lose some, I do suppose!

Glad to hear your consultant(s) are so good, I hope your recovery is going well

[lloydyuk in reply to disloyalorder]

Thank you, likewise I'm glad you generally feel better. Can I ask how your seizures manifested as the thought I had similar however it was diagnosed as Myclonus and I still twitch strongly from time to time if cold or tired usually. Has never been explained tho. I'm quite lucky I think as well as haemorrhage I got ventriculitis and hydrocephalus with recurring infected shunts. Despite this I see the positive in life.

[disloyalorder in reply to lloydyuk]

I was already in hospital when all of this happened/I deteriorated, and I don't really know what kind of seizure I had. I think it was just the one, and all I've been told is that I was disoriented, not responsive and I didn't recognise my boyfriend or my parents who'd been sitting by my bed, and I didn't know where I was even though I'd been there 5 days. I still get spasms occasionally, but they're not frequent enough for me to really keep track of them or bring them up with my neurologist. Like you, I do think they get worse or more frequent when I'm tired.

I had a shunt and a drain put in when I was in ICU, but I think it was removed before I left there. Was very strange hearing about the theatrics that went into monitoring the drain. I couldn't see what anyone was doing, but anecdotally I was told it involved a spirit valve from a DIY store...

Always good to remain positive about these things though, it can be so hard to be but realistically what's the alternative!

[lloydyuk in reply to disloyalorder]

You sound like me!! Lol I often say the alternative to positive isn't worth thinking about it gets you nowhere! Best wishes to you, keep strong

[lloydyuk]

Thanks I'll update if/when I do

[Lure2]

CAPS is a multi-organ failure and need intensive care therapy. It is lifethreatening!

Can occur when Warfarin-therapy is stopped.

Kerstin in Stockholm

[lloydyuk]

Has anyone heard back on this? My email keeps being 'delayed' and the tech message says server will not receive!!

Any ideas?

Danny

[disloyalorder]

I heard back from Juliette and am going ahead with this, although discussions are still in their early stages.

If there are other CAPS survivors on this forum who'd like to share their experiences, I would really like to incorporate everyone's views - I can only really speak for what happened to me, but any additional knowledge/advice I can provide from other patients is sure to help the team.

[MaryF Administrator in reply to disloyalorder]

Great idea! MaryF