As a carer or family of a relative diagnosed... - Vasculitis UK
As a carer or family of a relative diagnosed with vasculitis, where did you find the "initial" information about the disease?
I started right here.
We Need FAR better support from the health care professionals
I found the most useful information on American websites like the Mayo Clinic and John Hopkins, both good research hospitals in the US.
I received brief information from my consultant and then I researched internet. I found useful information and support here.
The most useful information at the time was an American website. I then found a website of an hospital in Edinburgh who had a link to Health Unlocked.
When John was first diagnosed back in 2001, I arrived home from the hospital and googled Wegener's Granulomatosis and frightened myself to death! I thought John was going to die. He was coughing up blood, on oxygen, bedridden ( totally Immobile ) and lost so much weight. I eventually found the old SSVT support group and Paul and Jill Pegg were both a wonderful support for me.
As answered by my lovely: "Well, you told me everything and I looked a bit on the internet. I relied on you to tell me everything I needed to know. I googled vasculitis and found some scary stuff so I stopped looking."
Ha ha rasp! My husband would probably say the same apart from the fact that he doesn't do online! So all info comes from me.
Ha ha, nice to know I'm in good company Mrs Trapp. I had to fill the survey on his behalf as there is no way he'd sign up to healthunlocked. It works in my favour at times...he really doesn't have a clue when it comes to 'all things' medical, but it can be a drag to have to explain over and over.
Whoops, I'm the person with Vasculitis. Shouldn't have done this poll, sorry. But my first port of call was Vasculitis UK website.
I received no information at all from either dermatologist who did the biopsy or immunology who requested the biopsy. I have tried to get info from the Internet and I was 2 years in before the diagnosis and four years in before I found VUK, my hubby found the info for me and when I had spoken with John I just sat and cried that someone understood and gave me some information on what was happening!
I didnt get any information about it from the general hospital where my husband was initially diagnosed, initially I looked at my medicine text book that I have from when I trained as an Occupational Therapist 15 years ago - it scared me half to death as it said Wegeners had a 100% mortality rate!! Thankfully I found Vasculitis UK online and got most of my information from their web page.
The only information we were given when he was first diagnosed was about Cyclophosphamide which a well meaning SHO had printed off the MacMillan website and scared my husband as it was all about cancer! Very inappropriate! Again this was in the general hospital. Later he was admitted to Hammersmith Hospital so had specialist treatment and we were given much better information.
I was very lucky in that my initial consultant had treated vasculitis for 30 years. I was his 40th patient.
I was very lucky, my consultant sat down with me and was very frank and down to earth, but up-beat
Tony
Told by junior doctor that he thought it was WG
As soon as he left googled it - thought the worse as you see 'life expectancy 5 months' First you then see without treatment
Went home - past midnight - searched for info
Not sure how soon we found VUK but within days had lots of info and support from Susan including names of docs at Cambridge
When Giles was in ICU (we were told may not survive night) we managed to subtly ask that consultant contact Cambridge (a friend and Senior Nurse helped pass info ).
We also discovered RMab via VUK and had asked for this prior to ICU and it was arranged
We were also helped by my sister who works in ICU in the states and she told us of all the treatments used out there
Giles probably had symptoms fir about 2 years before admitted tests done at hospitals. Told by GP We had wanted funds (£250) by going to A&E a month or so before. He was undergoing tests privately with a Rhemy and Ent specialist. An operation was arranged by Ent but too ill to have it (week or so before admission)
Rhemy had said not rheumatism not sure what it was but he had feeling due to infection in his sinuses.
Giles's illness must have been one of the few diagnosed there. The young docs followed him around the hospital and told us that they were 'excited' when the diagnosis was confirmed
One if my other sons had opp same week at the Nuffield and when the surgeon went to check him post opp asked all about Giles
I was fortunate to have a fantastic specialist in a vasculitis research facility who sat with me for over an hour explaining everything to me in a frank but sensitive manner. I also had a specialist nurse with me who followed me out of the consultant's room and sat with me and my partner for another hour trying to pick me off the floor!! I then luckily found Vasculitis UK and John Mills who helped me in the first few weeks.
A woman who also had WG living in a nearby village heard about my husbands diagnosis and contacted me. The lady provided so much useful information and support. I will always be grateful to her as the internet search I then did would have terrified me without speaking to her first.
