Having a Rare Disease does not always show on the outside....

[John_Mills]

But you don't look sick.....

Remember Rare Disease Day 28th February 2013....

[antony9500]

It may be devastating news for the family and sufferer but the support from friends, new friends, true family and professionals can be truly uplifting

[Hidden]

How true a saying .some People just don't seem to understand. And some people don't want to. I have had vasculitis since 1997 .and it still difficult to try to get it across

[nannie]

I don't always try to explain Edward. My family and good friends understand but I don't think some people really want to! That's why it's so nice to have the backing of the group. People here always understand!

[blackgolf]

I know the feeling i was retired on ill health grounds and still have to keep justifying my illness. Not even the factors who work for pensions dream to understand cnvs. It is a terrible disease to live with daily . I was diagnosed 9 years ago

[BooBoo39 Volunteer in reply to blackgolf]

Hi Blackgolf , know exactly what you mean. I also have been retired on ill health grounds through CNSV what a battle that was with pensions etc. Even now when i have a better day ex collegues remark on seeing me when am i going back to work and appear to expect some justification as to why i am not. I find it so frustrating sometimes because many people say they understand but so clearly do not have a clue. Thank heaven for close friends and family, who accept the new changed me and treat me 'normal'!

[Hidden]

It is hard sometimes especially at work . Although I only do 3 days a week . One day on one day off etc. they want to push me down occ health route.have had few days sick. Try to educate them. They not interested. Just see a process they have to follow.and not the person .never a truer saying than the one at the top of the page

[Hidden]

Some people don't know how fortunate they are. I also have diabetes on insulin and metformin , having steroid injection in march for frozen shoulder with physio. osteoarthritis in both feet ,disc prolapse, thyroid on thyroxine,plus few others health problems . Came out of hospital on Monday had to have my coccyx manipulated and steroid injection. But still stay positive

[Bill1959]

Reading the comments above about people not realising we are ill . I have found that the friends I had through our local rugby club. That it is harder than I thought to get them to understand what Vasculitis is and how it affects us in different ways. As I say 4years ago I had a lot to do with the club that I was a member for 35 years. Now I would be lucky if at least 5/10 people still speak .

I found great people that I would have never met going to the support groups held in Edinburgh by. LCTF run by Grant currie and his wife . But as I tell my wife whom is a support if they were real friends they would understand how I and we all feel ..

So here's to all my new friends fellow vaccines thank you

Cheers Bill

[blackgolf]

I feel really glad i found this site and joined cause its the first time i have felt understood and more comfortable with my condition. People are very narrow minded and ignorant to our health condition especially occupational health doctors its really about time they educated themselves and joined this site or maybe this site could send them some information .