Wegener's Granulomatosis Support Group

Hi My name is Pat and I have had WG for 28 years. I was diagnosed 5 months after the birth of my first daughter. Of course I was devastated thinking my daughter was going to lose her mom. But with the help from God and lots of doctors I am still here today. Four years after my first girl was born I had another girl. I have definitely been through a lot, but I feel lucky compared to many. I wish you all well in this journey we are sharing.

It helped me reading this. However, I was so sorry to hear that you have had this for so long.

I wish you all the best.

I have signed in as a new member but it is my husband that has WG. He was seriously ill a year ago and we are now having to come to terms with it. I am just so grateful that he is still alive.

Reading others stories has helped me as it helps you to not feel so alone.

You take care.

Shakti (not my name but I tried so many others I used this out of desperation!)

Dear Shakti. Welcome to our support group. I've only been here a couple of weeks myself. I just wanted to give you my point of view when you mentioned having WG for so long. I've had it for 29 years. I don't feel sorry for myself for having it that long, I am GREATFUL that I am still alive and have seen my daughters grow up. I was diagnosed in 1981, five months after the birth of my first daughter. Of course it was devestating. Back then they knew even less than they know now. I prayed I would make it to see my daughter start first grade, etc etc. My youngest who is 25 just got married! So, don't feel sorry for me, be happy I'm still here to see my girls grow up!

Best of luck to you and your husband. Pat

I am so pleased that you are still fighting WG and have been able to see your daughters grow up. Really glad that so many people are managing to get benefit from the medication that is available today.

Wishing you all the best.

thanks.