Its the start of May and I have got the urge to write something, what I don’t know yet but I am sure something will come to me.

We have a couple of newcomers in our ranks, they are Apie and Silva Baard who came here from South Africa late last year and settled for the moment anyway in Invercargill, their two children had come here some 6 months prior to them and their Daughter who is 20 years old enrolled in Otago University in Dunedin while their son now lives in Lower Hutt. Now comes the bad part because the person who is suspected of having either WG or Vasculitis is their daughter. She is currently undergoing tests at Dunedin Hospital so lets hope that they all turn out to be negative. By the time this goes into final print I should have an update on her condition. Those of you on E-Mail if you would like to “speak” to Apie or his wife Silva let me know and I will send you their E-Mail address, I know that they would get great comfort from hearing from some of you as being in a new Country and having problems like they have at the moment can be pretty daunting.

Also, just joining us is Leo Roche of Hamilton who was given my name by Richard Death, an old friend of his, they both have Brass Band interests. Thank you Leo for your kind and generous contribution to our funds, I promise it will be spent very wisely and carefully as I have several projects in mind for the future and none should be too costly one includes sending out some information gleaned from the Internet on the latest I can find on WG obviously.

How many of you when you go to your doctors surgery and while you wait actually pick up a leaflet and really read it ( Ok there Mary put your hand down) Well I am hoping to get some brochures from various organizations in the medical world and allied companies to include with each newsletter, it is one way of keeping you up to date with some of the do’s and don’ts of current medicine that relates to WG and maybe some new products you may not have seen.

Some time ago I tore a tendon in my shoulder and while an operation is possible they do not recommend it so I have occasional Cortisone injections to help, anyway the doctor I see for this is an Orthopaedic man and he told me the following joke. George was in his late 60’s and still enjoyed a game of golf but once he had hit the ball off the tee he lost sight of it as his eyesight was not so good. Discussing this with a couple of friends and the club pro the pro suggested that he take old Tom with him next time he played, "but Tom is 94" said George, yes said the pro but he still has fantastic eyesight so he next day off went George with 94 year old Tom in tow. Came the first tee and George hit a mighty hit on the ball which went for many meters. “Did you see where that went” said George "Yes said Tom" where then said George, Tom thought for a second or two and then said "I forget"

I now have at least a couple of people who say they are going to drop in and see me when they are in the area, I think that they want to check out if I really look as bad as I did in that photograph in the newspaper article, I have been very tempted to copy a photo on to this newsletter of me in uniform as a sixteen year old cadet in the Blue Star line but I have resisted the temptation, why should I make all you girls hearts go faster.

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I have been going through some of the survey questionnaires that the late Jan Bailey sent out some time ago I have decided to at least try and do something to help improve the knowledge that doctors have about WG in New Zealand which from my reading is sadly lacking, due of course to its rarity.  Frankly, when I read some of the comments and statistics from WG sufferers and their in some cases deceased family I could weep, the completely senseless loss of life through the lack of knowledge and in others the failure to ask for help from specialists by GP’s. Of course, physicians obviously cannot know every medical condition off the top of their heads but there are so many avenues today to find out information if only people will take the time to find it. Here’s a thought and I do not know if this is done but in practices where there are several doctors do you ever sit down over a cup of coffee say one afternoon a fortnight and discuss your cases especially the rare one so that your colleagues are aware of what is happening around them and not just rely on the patients notes if they have to treat them due to their regular doctor being away.

I will be sending this Newsletter to about 40 Medical Professionals but please when you next go to your doctors surgery take this with you and give it to him or her pointing out the open letter to GP’s in the next part of this newsletter. I have also selected a number of articles by prominent American Specialists in the WG field and I am sending these also to my list of doctors.

One of the surveys that Jan got back was from a couple whose daughter developed WG at a very early age, she was in her early teens and she died some eight years later still a vibrant young woman who deteriorated over a period partly because of doctors who really knew nothing of WG attempting to treat her in the early stages of the condition and because of delays in diagnosis, and considerable delays may I say, and on top of that wrong medications being prescribed. There is a very strong possibility that her life could have been saved if the specialists she eventually consulted had been contacted earlier. OK, she may not have been able to have the quality of life that she would have liked BUT she would have had a life. Strangely enough in her few working years she went into a branch of medical care as a Radiologist. My hope is that this part of my article does not upset her parents who I know still get these newsletters. You see her Mother was the one when I was reading some of the questionnaire replies who got me off my backside to write this, she suggested quite simply that, Many radical treatments were tried without success, a non proactive specialist led to much frustration which caused X a lot of stress. She became very disillusioned at the end and managed after a great struggle to change her specialist. It seems as it always did that there is not a lot of communication among the specialists and a lack of informed information on sharing within the country, so many of the doctors involved believe they are dealing with isolated cases. These words were written by a bereaved mother and obviously came from the heart.

Doctors because of their profession see and have to tell patients too often that they have a fatal disease or condition and they will always make mistakes because they are not infallible but by sharing knowledge, giving up that golf game and doing some research and study on these strange and incurable conditions maybe, just maybe a few more WG patients will be diagnosed early, consequently my aim is to set up a panel of specialists, maybe only one in each major city, who have knowledge of WG through treating patients with this condition who will be prepared to be available to other doctors around the country to advise them on treatment and diagnosis. One suggestion I have is for any doctor to go on the web and look at the site named NZORD, the NZ Organisation of Rare Disorders where they will find a huge amount of information on these unusual and rare conditions.

I am in a very difficult position that while I am not a doctor, through my research and reading of WG and with my contact with overseas WG groups plus my own personal experience with WG I possibly have more knowledge than many doctors of this rotten condition, I sincerely hope that any Physician reading this will accept my comments as a sincere and heartfelt plea to do more to understand and know about WG , not necessarily for the existing WG sufferers but for the ones that are to come, and there will be some of course, may they be treated quickly, well and with the love and understanding that they need.

A friend and Wegger in Palmerston North rang me the other evening to say she had now developed diabetes, this is common with WG and allied conditions so please have a blood test to check whether you are a diabetic. I am, and I joined the diabetes society, they are based in Oamaru and you should be able to pick up a brochure from your doctors surgery so do it now, Diabetes 2 can and is controlled in the main by diet, only in severe cases do you have to inject insulin. Problems that can occur are poor blood flow to the feet causing ulcerated toes etc, your hospital podiatrist will be able to help you if you like me have difficulty cutting your toe nails, my sons father in law lost both of his legs through ignoring Diabetes, don’t let this happen to you.

While we are on the subject of health, I received an E-Mail again from a dear lady who sends me lots of jokes, all clean of course, about how to recognise someone having a stroke. I wont go into all the background except I will detail three simple steps anyone can take to ascertain if a person has had a stroke and if so send for help immediately, time is of the essence here.

The three simple steps are:

1. Ask the individual to SMILE
2. Ask them to RAISE BOTH ARMS
3. Ask them to SPEAK A SIMPLE SENTENCE
   

If he or she has any trouble with these simple tasks call 111 immediately and describe the symptoms to the dispatcher, you may save a life or at the least prevent brain damage.

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I had another E-Mail from a lady who suggested that these Newsletters were negative but unfortunately she did not give me any suggestions as to what she would like to see, now this I will admit hurt as I seem to spend a lot of time over its production, I cannot give medical advice, I cannot really discuss medication although I can comment on possible side effects and I can comment on symptoms but if I cross the line with trying to be helpful then I stand the chance of getting into serious trouble, I will support, counsel, and make suggestions about who to see and how to ensure you get the best treatment available, but that is all. I say this because we must all know where we stand and what our limitations are. I try to be positive

I am going to include with this letter a simple limited answer survey part of which will help me with my attempt to get a group of specialists who know WG to be advisers to our group. One question will be do you object to me publishing your name and phone number or E-Mail address so that you can contact each other when you are feeling down, a sort of phone group therapy, there are so few of us and so spread out that sometimes a phone call from another Wegger can really cheer you up even if its only to realise that you are not so bad after all, and there is always someone worse off than you. They do this in Australia and I think it is a good idea for Weggers to know that there are other people near at hand who will understand how we feel and who we can talk to on the phone even if its only to get some sympathy, which reminds me I must make a call to a gentleman I have not spoken to for some time.

Just recently the Government changed certain road rules just to confuse us older people, supermarkets do the same with where they put items on shelves. Just to remind you of the basic changes here they are. If you are unsure about these changes then please get more information, contact either your AA shop or the local Police Station.

PEDESTRIAN CROSSINGS - Drivers must give way to pedestrians on both sides of the crossing, unless that crossing is divided by a raised traffic island.

CYCLE LANES - Only cyclists may use cycle lanes although you may cross a cycle lane to access a road but you must give way to anyone using the cycle lane.

ROUNDABOUTS - This is an area that seems complicated but really is quite simple if you think about it. Basically before entering a roundabout you must indicate if you are intending to exit left or right, or if you are going straight ahead then don’t signal. I have included some drawings from the LTSA web site which hopefully will help you with this. OK it looks complicated but when you see the coloured drawings showing traffic flows it gets easier I think.

MARY GIBBS STORY

Here's a tale of courage and fortitude by someone who still has a great sense of humour, she writes:

After my initial illness about 11 years ago I was very ill and took ages to diagnose. Once the correct medication kicked in and I started to feel human again I got a bit cocky, tought I was 10 feet tall and bullet proof. After a years remission I had my first relapse and that really cut me down to size. It made me realise just what an awful illness this really is. I am a much more human person now.

My GP has been on to me for ages now to tell you about the “THROAT”, my last relapse affected my throat with the Granuloma almost blocking off the airway. It formed a circle around the trachea causing a sub-glottal otenosis. My voice disappeared altogether and the breathing was most precarious. Just needed a wee bit of mucus to get stuck in the tiny aperture I had to breathe through to cause a big panic. It actually happened twice, but I was fortunate in having a hot drink at hand ,(good old Thermos ) which relieved the situation. Anyway I went to my ENT chap and said that I was fed up with the way things were, the Prednisone did not seem to be reducing the Granulomas and would he please do a Tracheotomy and I didn’t mind if it was with a blunt rusty knife. He said he would do better than that and referred me to a colleague who had a flash new laser machine . Within a week I was in Hospital and had my throat lasered and it can be redone if necessary. Wasn’t that wonderful. My breathing is not a hundred percent but at least relaiable which is rather important as I live on my own.

Take care
Mary Gibbs
Christchurch

A great story and in editions to come I will publish more of your stories as I have a few in waiting.

With the winter really well on the way don’t forget to have your flu shots, the simple rule is that providing the vaccination uses a dead vaccine and not a live one you are quite safe having them. The authority for this is the UK Stuart Strange Vasculitis Trust, I am having mine next week and by the way due to your condition being an immune system problem ask for the strong one we need all the help we can get.

I had my 76th birthday in mid April and my lovely daughter and her family really pampered me, she is expecting her third baby in November, I gave her a book after the first on what was causing it but she did not read it. Talking of that years ago there was a lady called Marie Stopes who wrote a book on birth control and the following rhyme came about.

There was a girl called Edith Hopes
Who read a book by Marie Stopes
But one can see from her condition
That she has read the wrong edition.

Well that’s it folks for this one, please send me the details I ask for in the short questionnaire it will help me in my attempt at disseminating information to the medical profession.

Keep happy and keep well
Guy

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