Chief Strauss syndrome

[Melepop55]

Asthma is part of my illness and have been ventilated with it,also and a track in.I have churg Strauss syndrome.I'm in the last stage ,so fed up that no one knows this illness.I am on my own with this .does anyone know whom or where I could go Melanie

[Griffon]

Hi Melanie , Have to own up I had never heard of your condition , so googled it before making this reply . The first thing stated was that it is an extremely rare condition and asthma sufferers are predisposed to it . Because it affects the blood vessels I imagine it affects the whole body , and is a difficult condition to manage and treat .

Sorry I'm not offering any real advice , I can only sympathise as this must be a horrible illness to have .❤️

[PMRPete]

Churg Strauss Syndrome now renamed Eosinophilic Granulomatosis with Polyangiitis (EGPA)

The only UK organisation dealing with this, appears to be:- Vasculitis UK:-

vasculitis.org.uk/about-vas...

You can contact the Vasculitis UK Helpline for information and advice about vasculitis by telephone [phone] – they try to answer calls between 8am and 10pm, but they are a small team, and on occasions you may hit their messaging service. They check for messages several times per day and will get back to you as soon as they can.

vasculitis.org.uk/helpline

[Echoblue]

There is also a Vasculitis group in health unlocked too - may be worth looking up. You can belong to more than one group - look it up via communities 👍🏻 x

[Riff1954]

I would strongly suggest that you call the Vasculitis helpline as above. EGPA (previously Churg Strauss Syndrome) is very rare (around 1000 cases in the UK) so it is vital that you are under the care of a team who understand the condition. There are a small number of hospitals around the country with the expertise to treat you and the helpline will advise you based on your location

[HowNowWhatNow]

Hi Melanie,

First of all - I am so sorry. I am not an expert on your condition, and I wish I could help more.

Which part of the world / country do you live in? Asking in case anyone here is able to give you responses local / relevant to your part of the world.

[hilary39]

This sounds so hard. Just writing a note to say I'm sorry to hear this and that I hope you find good care as soon as possible.