Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,941 members•6,973 posts

All posts for February 2025

Rare Disease Day 2025

#RareDiseaseDay2025 is TODAY! Vasculitis, is rare, vasculitis is (usually) chronic, vasculitis can be severe even fatal. Living with a rare...

#RareDiseaseDay2025 is TODAY! Vasculitis, is rare, vasculitis is (usually) chro...

zoe69

Administrator•2 months ago

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so I’m going to be having anca blood test Wednesday

so a bit of back ground, I have struggled with pins and needles in my arms and numbness in my lips at night when I sleep for quite some time however fades...

so a bit of back ground, I have struggled with pins and needles in my arms and n...

Leanne19862

•2 months ago

14 Replies

On behalf of Evolve Fieldwork

For parents with children with ANCA associated vasculitis (GPA,MPA, EGPA) Make a Difference in the Lives of Children with AAV! Do you have a child...

For parents with children with ANCA associated vasculitis (GPA,MPA, EGPA) Make ...

zoe69

Administrator•2 months ago

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Rare Disease Day 2025 countdown

Rare Disease Day 2025 countdown, one week to go! Equity in a rare disease like vasculitis is not only about fair and equal access to diagnosis, treatment and...

Rare Disease Day 2025 countdown, one week to go! Equity in a rare disease like ...

zoe69

Administrator•2 months ago

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Showcase event for children and their carers

For those with children with vasculitis (or other rheumatic diseases) The UK’s Experimental Arthritis Treatment Centre wil have a Children's Showcase Event on...

For those with children with vasculitis (or other rheumatic diseases) The UK’s ...

zoe69

Administrator•2 months ago

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Rare Disease Day 2025 Countdown

Rare Disease Day 2025 countdown, two weeks to go! 300 million people may sound a lot, but it is only 3.6% of the population and we are talking about more than...

Rare Disease Day 2025 countdown, two weeks to go! 300 million people may sound ...

zoe69

Administrator•2 months ago

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IgA vasculitis study

IgA vasculitis study led by Dr Oni at Alder Hey has now had approvals to support remote national recruitment. This will include courier collection of urine...

IgA vasculitis study led by Dr Oni at Alder Hey has now had approvals to support...

zoe69

Administrator•2 months ago

2 Replies

Anyone diagnosed with GPA and PMR?

Hi I know lots of people have GCA and PMR but has anyone been diagnosed with GPA (Wegeners) and PMR? I am sure I am in remission from GPA and strongly...

Hi I know lots of people have GCA and PMR but has anyone been diagnosed with GPA...

Pompey3

•2 months ago

2 Replies

For our members in Wales

From NHS Wales We are excited to announce the launch of our MSK Lived-Experience Group. To kickstart recruitment, we are hosting a webinar on Monday 3rd...

From NHS Wales We are excited to announce the launch of our MSK Lived-Experien...

zoe69

Administrator•2 months ago

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Best hospitals for Treatment of GPA

My husband was diagnosed with GPA (Wegeners at the time) in 2012. He has been treated since by the Worcestershire acute hospitals Trust, but we are becoming...

My husband was diagnosed with GPA (Wegeners at the time) in 2012. He has been tr...

Clairabella46

•2 months ago

7 Replies

EasyFundraising

A big thank you to our amazing supporters who raise free funds for us on #easyfundraising. If you're not signed up yet, please join today and you can raise...

A big thank you to our amazing supporters who raise free funds for us on #easyfu...

zoe69

Administrator•2 months ago

1 Reply

Iga vasculitic leg ulcers.

Hello I am Tor-Happy, I have had an ongoing issue for 18 years with Iga, Leucocytoclastic or HSP. For many years I have had ulcers on my lower legs and...

Hello I am Tor-Happy, I have had an ongoing issue for 18 years with Iga, Leuco...

Tor-Happy

•2 months ago

2 Replies

sural nerve biopsy

new rheumatologist is DEMANDING a sural nerve biopsy. Research found in NIH 2024 has shown many side effects 1. infection 2. long term healing 3. phantom...

new rheumatologist is DEMANDING a sural nerve biopsy. Research found in NIH 20...

irishponies

•2 months ago

6 Replies

Is there anyone on here with GPA Vasculitis and has a saddle nose deformity? Or lost their hearing and vision?

I feel so alone in all this

emmachamberlain

•2 months ago

13 Replies

Rare Disease Day 2025

The countdown is on, 3 weeks until Rare Disease Day 2025 Vasculitis, more common than you think, more serious than you know. There are 20 different forms of...

The countdown is on, 3 weeks until Rare Disease Day 2025 Vasculitis, more commo...

zoe69

Administrator•2 months ago

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Avacopan- tell me about your experiences

Hi. My Avacopan tablets just arrived. I see online it's quite a new drug with some serious potential side effects. I was hoping the group would share their...

Hi. My Avacopan tablets just arrived. I see online it's quite a new drug with s...

Chocolate78

•2 months ago

9 Replies

MPO ANCA Vasculitis - Feeling out of my depth…looking for any guidance please 🙏🏻

Thank you for letting me join this forum. This is the 1st time I have written on a forum, and have so many questions. Please do forgive my ignorance. In...

Thank you for letting me join this forum. This is the 1st time I have written on...

SparkleGinger

•2 months ago

33 Replies

Digestive and skin fungal issues?

I'm newly in medication remission from my GPA (after 4 Truxima infusions). I'm nearly off prednisone after 8 years (most of the recent years at 2mg daily...

I'm newly in medication remission from my GPA (after 4 Truxima infusions). I'm ...

SusanEleven

•2 months ago

3 Replies

Rare Disease Day 2025 countdown

February is here and the countdown to Rare Disease Day 2025 has begun! Vasculitis is a group of rare conditions, there are many different types. Vasculitis...

February is here and the countdown to Rare Disease Day 2025 has begun! Vasculi...

zoe69

Administrator•2 months ago

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Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for February 2025

Rare Disease Day 2025

so I’m going to be having anca blood test Wednesday

On behalf of Evolve Fieldwork

Rare Disease Day 2025 countdown

Showcase event for children and their carers

Rare Disease Day 2025 Countdown

IgA vasculitis study

Anyone diagnosed with GPA and PMR?

For our members in Wales

Best hospitals for Treatment of GPA

EasyFundraising

Iga vasculitic leg ulcers.

sural nerve biopsy

Is there anyone on here with GPA Vasculitis and has a saddle nose deformity? Or lost their hearing and vision?

Rare Disease Day 2025

Avacopan- tell me about your experiences

MPO ANCA Vasculitis - Feeling out of my depth…looking for any guidance please 🙏🏻

Digestive and skin fungal issues?

Rare Disease Day 2025 countdown

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