Burdie65 schreef op 2 oktober 2018 02:11:
Laatste update van HAE patiente Loukisha die zoals u hieronder kunt lezen nog steeds RUCONEST als PREVENTIEF medicijn gebruikt en met groot succes! 2 jaar géén Intensive Care meer hoeven te bezoeken en het beste medicijn wat ze de afgelopen 8 jaar heeft gebruikt!!!
Ik denk dat het goed is voor de HAE patienten dat er verschillende medicijnen op de markt zijn omdat elke patient zijn unieke kenmerken heeft en dat daarvoor dus een behandeling op maat gemaakt moet worden.
THU 11:22 PM
Hello Loukisha, thanks for your message! Thank God we are doing well! Hope the same for you and your family!
Really the news of the FDA was disappointing for us, Pharming and at the 1st place the HAE patients. You still use the Ruconest for prevention of your HAE? Hopefully the doctors stay on your side to help you keeping swell free as you told me before! Also Pharming is doing their utmost for development of more easy going treatments with the Ruconest medicine. Hugs from Brazil and stay with God! Kind regards, Bart
FRI 10:26 AM
Hello Bart,
I'm glad to hear that you and your family are doing. We're all doing well too. My kids are going through major growth spurt right now. Our son seems to be the most intense, leg cramps and wanting eat constantly.
The news for the FDA was upsetting to us all indeed. However I'm very confident that Pharming is working very diligently to gain the approval.
Since I have a doctor that is nationally and internationally recognized in HAE
I'm still getting my Ruconest without problems. I'm still using it as a prophylactic treatment against swells. I've been ICU & ER free for almost 2 yrs. I used another rescue medication once last year. I can have mild swelling, however the Ruconest doesn't let it get out of hand. This is the most stable I've been in 8+yrs!!
My heart is hurting for patient's that are not as fortunate to have a doctor well known and revered in the HAE medical community. I have faith that the approval will come. Until then I keeping supporting fellow swell friends anyway I can.
Thank you for writing back Bart. May you and your loved ones be safe and be well!!
Warmest regards,
Loukisha
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