Last Thursday night, I attended an event held by a relatively new organization called Lyfebulb. I got an email from one of their PR people, which was how I heard of the foundation and the event.
When I first arrived, I spoke with two women who seemed to be talking on behalf of the company while the founder was occupied. They briefly explained that Lyebulb was created by Dr. Karin Hehenberger, who was a patient in the chronic illness world herself. They have support both online and offline. I believe the event last Thursday was their second in person meet up.
The difference between this and other support groups, or meet ups was the venue. The woman who handled their PR said that they didn’t want it to be something sad but rather an upbeat social event where patients can go to get the support they need.
Now, I am not sure if they are planning other things that are more patient-focused because in all honesty, it was great meeting so many inspiring people and being a part of the experience, but if I was patient searching for support, I would not feel comfortable doing so in a loud, crowded bar. Add to that, there were people with various backgrounds and purposes so it wasn’t like you knew you were going to approach a fellow IBDer if you had the courage to start talking to someone. Not to mention, screaming your IBD symptoms and experiences (due to high volume of noise) is not something I would imagine a newly diagnosed patient, someone who is still struggling to open up about their disease (or the majority of patients for that matter) would feel comfortable doing.
There was a patient who spoke (but no micrphone so hard to hear), as well as a doctor (I assume a GI since once again, it was very difficult to hear him) briefly at the event. I was a little surprised because the invitation said I would be learning about new therapies and a new app that was coming out. Things must have changed.
I think that Lyfebulb could really end up being a very positive force in the chronic illness community. I do, however, think they have a lot of work to do.
I do look forward to seeing more of what Lyfebulb does within the chronic illness community. I think they have great ideas and very good intentions so I am very happy I was asked to be part of the social gathering.