Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I love this forum, don't get me wrong, but I feel a real need to personally connect with other immune deficient patients. I want to see faces, and have real conversations. Not sure how big our population is, if this would be a possibility, but what are your thoughts on this? Is there any guidelines advising we shouldn't meet? I have lost a lot of relationships due to friends not understanding my journey. Nobody wants to have frequent get togethers in a hospital, and people don't always understand me turning down offers for going out. I have had a lot of scary reality talks on prognosis, which I don't want to hear at 20! I need to have connections that understand and walk this same journey! It may even be helpful if anybody connects on facebook, or skypes! I just need interaction. I know this is probably a shared frustration. I was forced to switch my infusion center to my insurance company and it hit kind of hard that my nurses were my closest connection in this whole mess to having somebody relatable. Thanks for all your wisdom, beautiful people!
It's lonely!
I don't know where you live, but the IDF has a list of Local Patient Meetings, IDF Retreats, and Get Connected Meetings. There's a calendar of events also.
Here's the link
http://primaryimmune.org/patients-and-families/idf-patient-education-programs/local-patient-meetings
I hope you get to go to one of these!
Also, GammaGard has a great patient partner program. It's only over the phone, but I am able to speak to an awesome woman who has triplets and a daughter all with CVID...we've been talking for over a year now on a regular basis, and even though it's not in person, a voice on the other end of the line is great some times and this is someone who REALLY gets it!
Best, LuLu
hope that helps????
if you contact IDF they can help you set up a patient meeting in your area....we do our group through the IDF....