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Loukisha's Story Thank you Nounou Nass for your response on Loukisha's Story. I welcome sharing of information that can be helpful to the HAE community. I'm currently looking into Ruconest, to see if it is a viable option, to replace my current prophylactic treatment. Again thank you so much, for your willingness to share about other HAE therapies.
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LeukMeer reacties weergeven · Beantwoorden · 23 september om 11:46
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Linda Croll
Linda Croll I too, have HAE and I am beyond frustrated with the unavailability of Cinryze and their lack of communication proactively. I was put on Berinert, but as you know, it too, has become unavailable due to production demands. It's a scary thing to be out there walking this tight rope without a net. I'm hoping that Ruconext is the solution. But then again, so is everyone else who is having to bail to that drug as well. Be well, take care and only positive thoughts in hopes that meds are available soon. I have laryngeal HAE and so every day is like the a very loud ticking of the clock hoping I don't have an attach before I can find suitable (and available) meds. Hang in there!
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LeukMeer reacties weergeven · Beantwoorden · 21 uur
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Loukisha's Story
Loukisha's Story Hi Linda , and thank you for your response concerning the HAE medicine shortage. Our community is going through such a difficult time, many are frightened , angry, and panicking trying to devises treatment plans. I too hope that Ruconext is a viable treatment option for myself as well as other. I will be talking to my Specialist to figure out my treatment plan. Making this change is very nerve-racking to me and my doctor. Since I have a very sensitive system, I must be closely observed. My HAE attacks are always quick , unpredictable and ,aggressive with tongue, face and airways swells. I also have a lot of medicine allergies, so every medication change must be done with extreme caution. My hearts desire is to see all of us find the best and safest treatment plans. Thank you again Linda for your words of encouragement in this time of uncertainty. Be strong and courageous, and please let me know how you are doing. Please come back to Loukisha's Story to share your thoughts. I believe that everyone has a story to tell, so don't be afraid to tell yours. :)