Burdie65 schreef op 29 november 2017 03:03:
Hieronder een persoonlijk bericht van Loukisha via FB als reactie op het indienen van Profylaxe licentie voor Ruconest bij de FDA;
Hi Bart,
Thank you for sharing this information concerning Ruconest. It is exciting to know that Ruconest is doing amazing things in the lives of men. women, and children in the HAE community. I look forward to hearing of the day when everyone has access to Ruconest. My family and I are so grateful for an HAE therapy that doesn't share the dangers of blood/plasma products. We're also so grateful for your fast response during the C-1 shortage.
Personally HAE has taken a great toll on me and my family. Since almost all my swells are airway, tongue and facial, I've spent weeks in ICU. Ruconest came at the perfect time, and I don't foresee myself using Cinryze again. My family and I try to live a life avoiding chemicals whenever possible. I really like natural remedies etc. to deal with illness when it is appropriate. However we have a respect for pharmaceuticals and know they are needed to treat illness too. Ruconest aliens with our way of life. C-1 made from a rabbit's milk sets our minds at ease and hearing how well the rabbits, are treated gives me peace of mind.
I cannot express mine or my family's gratitude for delivering a great HAE therapy, as well as a team that take pride in their jobs. It is easy to see they really care about the patients and serving with excellence. Making connections in an compassionate way is to be commended, this concept is sadly lost in business.
I'll happily follow the positive progress of Ruconest in the HAE community. Also I'll share about my infusions, and interactions with the Ruconest Solutions team here on Loukisha Story.
Sincerely,
Loukisha