Halo from sunny South Africa

[Esmarie]

I would like to introduce myself as I also have Wegeners. My name is Esmarie, I'm from the Western Cape in South Africa. I am married, with 3 children and 2 grand children. I was diagnosed with Wegeners only recently after about 5 years that my ENT could not pin-point my illness. Many blood tests were done, and up till today, it does not show that I have Wegeners, but I have all the symptons. He eventually consultated with a Rheumatologist and they decided that this is what I have. So, here I am, not really very sure what this is all about.

One of my daughters immediately went onto the internet, and came upon this forum sent me the link, and here I am. I started reading through some of the posts, and it sounded so familiar. I am here to learn more, because this illness is not very well known in SA. So, I have to learn, to learn my ENT and together I am sure we will work through this.

In 2009 I had a Trachea which I hated, but had it for almost 1 year. Still from time to time have problems breathing, but I have a nebuliser to help me. Another symptom is that I have hearing problems. My right ear can hear only a a little bit, and my left ear is ok as long as I have a gromit in it. The ENT calls it "my gum ear" Well, the gromit helps, so I am happy.

I am so glad that there is a "helpline" like this forum and that I know I'm not alone with this illness. Although, I noticed that there are not a lot of people in SA. I believe they are shy or not aware of this website.

I am really looking forward to learn a lot here.

[Pete]

Welcome, Esmarie!

This forum will be very helpful as you "experience" WG/GPA. There is usually someone to respond to your questions, and it's ok to vent your frustrations.

I have hearing issues as well. I wear hearing aids, and they help. My right ear comes and goes, but the left ear is pretty stable.

Good luck and better health!

[Rose]

Hi Esmarie and welcome

I am from Johannesburg and though originally from the UK, I have lived here for over 35 years. I was diagnosed in March 2008 with lung, kidney, sinus, ear involvement. Yes, you are right there are not many, if any, experts here in SA. A Rheumatologist is specialized in autoimmune diseases. He monitors the condition by way of blood tests etc. He is also familiar with possible side effects of drugs used in Autoimmune conditions and although he may not be an expert in Wegs, he will have more knowledge than any other speciality. You may even find he has treated Wegs patients before..... there are a few of us around. Your ENT is also important but if he has little knowledge of the disease it is best to have a Rheumatologist making sure your condition is being properly monitored. Are you taking any medication?

You have found the right place to learn about this disease. Please don't hesitate to ask any questions as there are plenty of 'experts' here who will only be too glad to offer advice and share their experiences .

Rose

[drz]

I remember one young man from SA who died from Wegs. i wonder if there is a candle for him on the map. Not everyone is aware of the map of how to put a pin on the map but it is a good way to learn about others close to your location.

[annekat]

I remember one young man from SA who died from Wegs. i wonder if there is a candle for him on the map. Not everyone is aware of the map of how to put a pin on the map but it is a good way to learn about others close to your location. drz, I think I saw the candle for that young man. I think his name was Brandon. And there may have been one or two others on there besides him and Rose. I hope Esmarie will go there and pin her name, plus it is interesting to see the distribution of Weggies all over the world, at least the ones who are on this forum and have added their names. The link for the map is at the top of this page, for those who don't know.

[annekat]

Welcome, Esmarie, and thanks for the introduction. Many of us waited months and years to get a diagnosis, or to even become aware that something needed to be diagnosed, after our docs treating us repeatedly for what we thought were allergies, sinus and ear infections, asthma, etc. But 5 years really is a long time, and I'm so glad you finally got your answer, and I hope you are getting proper treatment. There are a lot of places besides South Africa, even in the United States, where it is hard to find doctors who know much about WG and how to treat it. But it is possible for them to find out or to get in touch with experts who can help. The Vasculitis Foundation website is one place to start. And for many of us here, the forum is where we get most of our information and support. So it is a very good thing that your daughter found us for you. We really could not ask for a better forum with better people as members. So please keep us updated, and feel free to ask or share anything at all! I have never seen a post here go unanswered, and we may even get carried away and wander off topic, but we are always here for you! :smile1:

[Esmarie]

Hi Rose, thank you. I am so glad to see that I am not alone here. I know there must be others in SA. and I'm sure in time I will also learn about them. I'm seeing my ENT this week, so now I have info from my side to discuss with him. This makes this so a special site.

Be sure, I will ask questions from time to time. I have already learned so much in the 2 days since I've been here.

[Esmarie]

Thanx drz, I have been to the map, and my flag is there. Hope to see many more soon.

[Esmarie]

Pete, I also wear a hearing aid in my right ear if the left one is blocked. As I have been hospitalized on Monday, ENT put it a new gromit, so now I don't wear a hearing aid. He also remove some growth in my throat with laser treatment. It normally helps for about a year.

Good luck to you too!!!

[Alysia]

Hi Esmarie,
welcome to the forum :)
the best wg-experts in the world, are just here and you are not alone with it anymore. being alone is the worst. once you have friends to ask questions and hold your hand, you are already feeling better :hug2:
I wonder if there are less weggies in sunny countries, like SA and Israel. maybe. something to do with Vitamin D ?
what meds are you taking ?

[mishb]

Hi Esmarie and welcome.

I'm so glad your daughter found us, for you.

I'm glad your ENT finally found a diagnosis, but I'm sorry that you had to be sick at all.
It's sounds like you have had a bit of a rough time of it, over the years.

Alysia is correct, this is the best place to ask questions - actually, we are not medical experts in the real sense, but by living with the condition, we do know something about it. For real medical advice, you do need to consult your doctors.

Take care and I hope things come good, soon

[Esmarie]

Thanx Alysia :thumbsup: It is so good to be here, and I am sure I will learn a lot from all of you here.

At the moment I only take Bactim and if necessary I nebulise. I use a nosespray as well, it helps with the phlem.

[Esmarie]

Michelle, belief me ... I keep on smiling, and I belief with my whole heart that I am not alone. Luckily I have a wonderful husband and wonderful children, although they are not near us, only a phone call away. And now I found you people - how lucky can I be!!!!

All the best to you too!! :thumbup:

[Alysia]

Thanx Alysia :thumbsup: It is so good to be here, and I am sure I will learn a lot from all of you here.

At the moment I only take Bactim and if necessary I nebulise. I use a nosespray as well, it helps with the phlem.

Hi Eamarie,
I am not sure that only bactrim is enough. it was a mistake my doc did with me, and things just got worse. are you going to get more meds ?

[Esmarie]

Hi Alysia, I am seeing him on Thursday, and then I will discuss what I've learned here with him and see where it takes us.

What meds do you take now? Alysia.

[Alysia]

Hi Alysia, I am seeing him on Thursday, and then I will discuss what I've learned here with him and see where it takes us.

What meds do you take now? Alysia.

Hi Esmarie,
thanks for asking.
I am now on pred 5mg, mtx 15mg per week, and rtx 500mgX2 every 6 month.
good luck with your doc ! update us how was it.