"Together we are stronger" Please consider becoming a member of Vasculitis UK

[John_Mills]

Vasculitis UK has representation in various medical professional groups dealing with Vasculitis and other NHS bodies and NICE. The more people with Vasculitis who are members of Vasculitis UK the stronger the voice when it comes to dealing with NHS administration, the UK government and the medical profession. VUK also works with similar organisations representing people suffering from other rare diseases. eg:- Lupus UK, Rare Disease UK and Genetic Alliance UK.

All Vasculitis UK members have an option to receive the hard copy bi-annual Vasculitis UK Newsletter/Journal. This is sent by post to members in the UK.

You can then recycle the hard copy newsletter by taking it to your hospital or GP waiting room or sharing with your GP, Consultant or Specialist Nurse.

You also have the option to receive the VUK newsletter pdf version by email.

All members also have the option to receive the periodic Vasculitis UK e-News

Vasculitis UK is run totally by unpaid volunteers who all have Vasculitis themselves. vasculitis.org.uk/about/mee... There are no offices and no paid staff.

The aims of Vasculitis UK are:-

To support those suffering from vasculitis diseases and their families by providing information and advice.

To inform and educate those with vasculitis about their illness so that they are empowered to take greater control of it.

To work with other organisations and medical professionals to improve the recognition, diagnosis and treatment of vasculitis diseases.

To raise awareness of vasculitis disease among medical professions and the general population.

To enable vasculitis sufferers to contact others with vasculitis.

To encourage and support the formation and development of local vasculitis support groups.

To support research into the causes and effects of vasculitis and into improvements in the diagnosis of vasculitis and into treatment of people suffering from different types of vasculitis.

There are two types of membership available:

Associate Membership which is free and Full Membership..... for more details please follow this link. vasculitis.org.uk/about/joi...

Thank you

John Mills

[cedric]

I am doing one at the moment at my hosipital my named nurse got in touch with me to ask if I would like to be involved of course I said I would because after all it will help my family friends in to what goes on with vasuliutus awareness I have also put it on facebook to warn people

[hsp1]

I am unable to pay to join as already spend most of my own money raising awareness of henoch schonlein purpura. I'd love to work with you perhaps you might consider taking over running hsp as a subsidary to enable it to gain charity status. Our groups feel strongly about the condition and I personally would like to represent our sufferers. This does all cost money, as I;m unemployed and long term disabled but with rather a large amount of skills I feel I;m in a good place to act as spokesperson advocate amongst other groups. This would need to be funded so I started the facility of allowing people to sponsor pages on the site henochschonlein.eu Sadly people didn;t take this us as at the same time I was trying to start my own advertising and consultancy business so perhaps people see a conflict of interests. I thought it was a positive move as my professional background in food, marketing, etc and sufferer of hsp allowed it to gain interest. It is now in the position of being able to have its name changed slightly to enable it to be totally self sustainable as a possible future charity but would need director, trustees to manage it. I am only interested in as I say helping by talking spokesperson and possible committee member. Any help would be welcome thanks /wendy

[John_Mills Volunteer]

Hello Wendy, There is no charge for joining Vasculitis UK. All we need is your name and postal address.

Vasculitis UK represents the interest of people with all 18 types of vasculitis, including HSP. We already have a wealth of excellent information on our website about paediatric HSP provided by one of the leading experts on the subject. We are currently in the process of adding a page of information about adult HSP. We have close links with all of the leading vasculitis experts in the UK and others in Europe & the US. So we are well placed to support people with HSP. If you would like to create a link directing people from your website to the relevant section of the Vuk website, we could discuss this.

Happy New Year

John

[samitherose]

dear john i would appreciate some support as no one i know has this illness i live alone as my husband left me while i was unable to walk and taking cyclophoside and 50mg of pred. i am now down to 17mg but find it hard to get off it as my leg paralises gets worse plus headaches and sickness my nearologist finds this hard to believe and would like me to try another treatment. i get very scared at nights and find it hard to sleep with the sweats too as afraid of taking ill alone. i am positive during the day and cover up a lot for my two sons but have no other family to talk to without sounding a moan. as i am not used to going out was married for 31yrs i would love to be involved with something but due to the pains in my legs cannot do too much for too long. any suggestions i do not think there are any groups nearby for me i live in northern ireland. thank you sami the rose

[SadiaC in reply to samitherose]

I am in a similar situation sami i am alone having come from a very big family and have a 10 year old. please feel free to email me and sound off i will check every day and will always be an ear to sound off too - you are not alone Sadia x [e-mail]

[Suzym2u Moderator Vasculitis UK in reply to samitherose]

That is such a sad story. I presume it's WG that you have. I'm rather worried that you are still getting night sweats despite having had cyclophos. What are you taking now in addition to the pred? You can always email me direct to talk about it - [e-mail] or send a private mnessage on HU. There is a very good support group in NI run by Julie Power. Here contact details are [e-mail] or phone [phone]

I'm so pleased that Sadie is now in touch.

Look forward to hearing more from you.

John