New to this. can anybody help?

[LADavies]

Hey guys.

so my dads been diagnosed with Vasculitis. it sucks. i hate it. but whats worse is the not knowing. and the amount of people who say ''what's that?''

so my question is, is there anybody on here who is finding it difficult to cope. someone maybe who i can talk to and understand better and hopefully help them through aswell.

My dad has always been a carry on type and wont admit defeat so he wont talk about it. i just need someone who will talk and will understand.

sorry for the rant.

Much love.

[JacquiM Volunteer]

Hello LADavies

I am so sorry to read that your Dad has been diagnosed with Vasculitis. I agree with you, it does suck. I was diagnosed in 2011 and am, thankfully, now in remission.

What type of Vasculitis does your Dad have and how long has he been diagnosed?

It can be very frustrating as not many people are aware of this disease but there are forums like this and one on Facebook facebook.com/groups/1635100... where you can chat to others with Vasculitis and their families.

Have you had a chance to look at vasculitis.org.uk/ That will give you lots of good information.

I am sure that others with family members who have Vasculitis will post on here with how they are coping.

Most of all, please note that you not alone

Take care

Jacqui

[Hidden]

I can understand your dad's reaction to vasculitis. Which type does he have? I have ANCA Vasculitis which is the most devastating one and has damaged my kidneys and the nervous system in my right foot and neck. There is no cure but medication will control it. It is very rare and no-one knows how it starts. He really needs to talk to someone but there are not many out there who have that type of vasculitis.

If I can help in any way please contact.

Ken

[Hidden]

Hi Lisa

I'm really sorry to hear your Dad has been diagnosed with vasculitis but as someone who has been challenged by it for the last 7 years I'm aware of the psychological effects just as much as the physical. I've worked with a psychotherapist and mindfulness meditation practitioner to help me deal with the bigger picture and despite the 'cost' this damned disease has caused, I'm a stronger person for the experience.

Jacqui's great advice is well worth pursuing and please don't hesitate to contact me directly if you'd like to chat away from here.

Healthy wishes, especially to your Dad, with love and light.

Martin

[LADavies]

Hi all, My dad has Churg Strauss vasculitis. something i know nothing about ha. thank you all for your caring messages as awful as it is so many people are ill its nice to know there are other people out there who understand

[AndrewT]

Please DO rant, if you want/need to- that's a main reason why we are here! Well alright not necessarily the main reason exactly- but if it helps you, to do so, then we will listen. I can safely say, having been a 'member' for a few years now, that we have all 'ranted' over the years. Without giving away any personal information- I can tell you that one lady, not too long ago, was very concerned about her daughter. She was being given the usual 'run around'- you know 'left hand/right hands', 'doctors/consultants' and so on.

Is there anyone that you can 'talk' to, you ask? Well yes there is US. Specifically John and Susan mills, who founded both Vasculitis UK and, this forum, Health Unlocked. John can be contacted via Vasculitis UK- Susan posts as 'suzym2u'. I'm quite sure that they, or indeed any of us, will 'talk' to you. Have you heard of/seen the 'Roadmap For Vasculitis'? A very interesting, if a bit 'technical', resource- again contact John, Sue or Vasculitis UK. I believe an 'on line' copy might be free but a 'hard' copy will have a small cost attached.

I hope that this has helped in some way, I look forward to your next 'rant'.

Love and best wishes

Andrew

[LADavies]

Thank you Andrew for your lovely reply. my next rant will be in just a min. haha

[PhoebeO]

I am sorry to hear about your dad. My husband was diagnosed with Rheumatoid Vasculitis in April of this year and has been very poorly. It took a little while for him to be properly diagnosed and he has been on a cocktail of drugs but, unfortunately, they have not worked as well as they should. He has a dropped foot due to nerve damage and is in constant pain. His rheumy has been fantastic and he is now awaiting his first Rituximab infusion.

I can fully understand how you feel and this site has been brilliant. Your dad sounds so much like my hubby in the fact he won't talk about it. He suffers badly with depression, which I think is the combination of the illness and the medication. Luckily, he is back working and has very understanding bosses.

I do admit I struggle too as it has been a tough year but, as the others have said, there is help and advice and the vasculitis website is excellent. Keep ranting ...... there are lots of people who will listen.

You are not alone and I send lots of love and hugs to you and your dad

xxxxxxx