Hello! I work for InVibe Labs and we are conducting a research study with patients and caregivers who have experience with C3G, IgAN, or aHUS. The research should take no more than 20 minutes of your time, and qualified participants will be compensated with a $35.00 gift card. All you would have to do is take a short screener online and then call into our voice-response platform if you qualify.
Please email me at yuri@invibe.co if you are a patient or caregiver with experience with C3G, IgAN, or aHUS and you are interested in participating!
Hey.. my son was diagnosed out of the blue in April 2021..he was literally shutting down without any of us having any idea..still in shock really. He has had very high blood pressure and very low HB from the start and still struggling, he has had some many issues it breaks my heart, we found out about C3G at end stage so given emergency dialysis instantly and continues to have it whilst waiting for a transplant , I have this in my mind all day everyday, constantly worry about him and find myself looking at him for any change or watching him move about( it’s a mum thing)🙄 he is very postive and try’s hard not to let it bring him down and I’m so very proud of him💙 I found myself researching and then realising I hadn’t been to sleep, constantly had pen & pad writing notes(I now have a file) I hope your son is not struggling or in any pain, message anytime x take care x
My son is 16, he was in the hospital in June and diagnosed with C3G in August. We have had trouble controlling his blood pressure’s. He also stay’s very positive and has a great outlook on life. We are waiting to either get in a trial or on eculizumab. How old is your son? I am sorry to hear that you have had to go through all of this. I am a registered nurse and learning about this disease has become my life. I have cried plenty of day’s. Good luck to your son. I will keep your family in my thoughts ❤️Take care!
So your sons can hopefully be controlled then..my son is 27 , may be a grown man but forever my boy💙 so good he is also positive,I try but learning that reoccurrence is 45/60 chance when transplanted makes me feel rubbish as I can not fix it for him, docter said they will be well and truly ready to treat with ecuilizumab to slow it as much as possible.. I know exactly what you mean and how you feel, it is everything that comes with C3G that causes more problems it seems but just 🙏🙏🙏 for a bit of controlled blood pressure for him, he has 5 different medications already😩. What stage is your son at?
He is still in the beginning stages of the disease. I still worry, because things can change so fast. Age doesn’t really matter, but there are more trials for adults than children. We are hoping to get him on a C3 inhibitor. My son is a typical teenager, so opinionated Lol But he is still my little (6ft) boy too.
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