Hello from Geneva, Switzerland!

[Taupinette]

Hello everybody!

I have just discovered this forum and, while going through these pages, I just felt less alone with my Wegener condition and felt like joining your team!

My name is Sophie. I live in Geneva, Switzerland, with my boyfriend and my little black and white cat. My mother language is French, so please excuse my English mistakes! I am 35 years old. My job is to be a patent attorney (I am drafting patents to protect the inventions of one large company in Switzerland).

I have been living with Wegener granulomatosis since many years but have been diagnosed just a little bit more than one year ago. My symptoms are focused on nose, vocal chords, joints and skin. I've gone a long way since this diagnostic and I really feel like starting a new life now! The days of "heavy" illness however still look not to be so far away and the treatment is still ongoing (with its nice side effects...), but my main message would be a very positive one: We have a chance get much better with the right medication and getting the diagnostic is just to be considered as a promise to get better soon!

I am looking forward to reading your messages and sharing some experience with you!
Sophie

A very nice day to all of you!

[Mas78]

Welcome to the group, I am sure that you will find lots of helpful information on here.
I'm glad that it sounds like you have found a good doctor and have a handle on your wegener's. I've been off meds for wegener's for about 10 years. Hope you to can get off of them soon and enjoy your "new" life.

[Taupinette]

Yes my doctor worked hard to find the clue. He also asked for expert opinions from other doctors and triggered meeting in the university hospital of Geneva. A great guy. I feel safer if he continues to watch and ensure that my new life can go on!

[annekat]

Welcome, Sophie. I'm glad you found us, and yes, being not alone with WG is one of the best things about being here, along with the info, support, and friendship you will find. I hope we hear from you on a regular basis. You might also want to put your "pin" on our map, click the link in blue at top of page that says Weggie Forum members map, and follow the links from there. I don't know if we have anyone from Switzerland yet, although we may. I'm glad your case is being managed properly and you are doing well.

[Psyborg]

Welcome to the forum Sophie. Don't worry at all about your English it looks excellent. Way better than my French is to be sure :)

[Pete]

Bon jour, Sophie!

Welcome to the forum. Sorry you had to find us, but glad you're here.

[jlove]

Welcome Sophie! Your English is great! I took 6 years of French and I don't think I could even begin to explain my Wegeners in your native language. I guess I could begin but it wouldn't be pretty.

I have symptoms in my vocal chords as well. Do people think you have lost your voice? I am often asked if I was screaming at a concert recently. I usually just say, "yes" nstead of explaining how my immune system attacked my vocal chords. It's easier that way.

You seem to have a good attitude and a good doctor. Best of luck with your treatment and I hope to hear more from you!

[mrtmeo]

Welcome Sophie!
What treatments have you had and for how long?

[chris.wg]

Welcome Sophie! Wish you didn't have a reason to find this group but barring that I'm glad you have. This is a wonderful group of people full of advice and information.

[Taupinette]

Hi Jlove!
Yes, people started to say that I lost my voice all the time since about 2011. Sometimes there was simply not a single sound coming out of my mouth. I remember one day I had to whisper something to a colleague who had to repeat it during a meeting at work... Injections of cotisone in the vocal chords saved me! Now I can even sing! The best reward was to hear my mom say that she finally recognized my real voice again after the injection!
Good luck to you too!

[drz]

Sorry you need to be here but glad you found us and shared your unusual story about how Wegs attacked you and how your doctors finally discovered how to help you.

[Jayne 14]

Welcome Sophie - sorry u have to join the gang !! But it's the best place to be for help support & advice
Good luck x love x and good voice x


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[kaysee]

Welcome to the forum Sophie,
I am glad you finally have a diagnosis but sorry that like me you have WG. It took 2 years or more for doctors to figure out what was wrong with me. Glad that you are finally receiving treatment and that your voice has recovered.

Karen

[BookNut]

Welcome Sophie! If I could travel anywhere, my first pick would be Switzerland. My husband and I did a tour decades ago. Had a wonderful time in France, Germany, Italy, Austria, Switzerland and Holland. e have always wanted to go back and spend more time in Switzerland after our three wonderful days in Lucerne. Welcome again. This a a terrific group!

[Donna-from-Philly]

Welcome Sophie. My best friend is a patent attorney here in the states. It would be hard to have WG and maintain such a stressful job. I hope you have been able to find a good balance.

[jlove]

Sophie, Do you get cortisone shots often? My ENT said they were an option for me a while ago (maybe 4 years) but at that point I was frightened by the idea. Now I think they might be worth it. I'm going to talk with my doctors about it.