beeldscherm schreef op 2 maart 2018 16:30:
Loukisha's Story
3 uur ·
Hello and welcome back to Infusion Thursday! Last night we had the pleasure of going to a dinner sponsored by #Pharming the makers of #Ruconest. It was great to see familiar faces from Pharming and a dear swell sister. The guest speaker was Dr. Douglas Jones of the Rocky Mountain Allergy at Tanner Clinic in Layton Utah. Compared to other pharmaceutical sponsored dinners, this one was informative, and inclusive of the entire family especially the children. We treat HAE as an Ohana, they go to my doctor appointments, and are encouraged to ask questions. The benefits of dinners that bring together patients, as well as physicians new to HAE is amazing. The exchange of knowledge is priceless for doctors and patients, it may help foster a relationship of understanding, respect and trust. Communication between physicians, and patients could help everyone work towards the common goal of wellness. The reward of such alliances would benefit not just the HAE community, but all doctor patient relationships.
Yesterday was my first time hearing a doctor talk extensively about HAE w/normal C-1. In the past only a sentence or two mentioned it in presentations. Often questions about this particular type were politely shut down. I’ve also been told to keep my questions until the end, and if the doctor has time perhaps they’ll answer me. Happily that was not my experience and I’m going to keep an eye on Dr. Jones. His passion and compassion for the Normal C1 individuals is encouraging and inspiring.
After the presentation we had the chance to casually talk with one another. My swell sister and I were discussing the difficulty in needle placement. A physician at the dinner graciously shared a technique for placing a needle for infusion. Tonight’s # Ruconest infusion I ceased the opportunity to put my new found information to use. Slap your face and call me Zsa Zsa! It worked! It just confirms my feeling that having dinners combining patients and doctors initiates dialog which gives us a chance to exchange knowledge and understanding of HAE. From these collaborations great opportunities for sharing information can occur.
Would you attend an event where doctors and patients are able to communicate in a more casual setting? What do you think could be accomplished during theses meeting? Please share your thoughts and ideas below. Always remember everyone has a story to tell, don’t be afraid to tell yours
...the Rocky Mountain Allergy at Tanner Clinic in Layton Utah.