Say what you will about bureaucracy, today, I am happy with the FDA! Smiles abounded and a few tears were shed when my family found out that the FDA had finally approved Eculizamab for the treatment of aHUS. My nephew, Isaiah has responded AMAZINGLY well to his biweekly Soliris infusions.
My brother shared his…Continue
A heartfelt thanks and gratitude for all of the hard work and dedication exhibited by the staff of Alexion. Their vision made the dream of a significantly better treatment for Atypical HUS a reality. Endless hours of research,were involved, folllowed with the effort of accelerating the FDA approval for Soliris, (Eculizumab), and most importantly, and their dedication to rare diseases.
A big Thank you is also in order to the…Continue
We wanted to take a moment to give you guys an update on Ben. Today, we reached another milestone. The doctor's are starting to ween Ben off of most of his blood pressure medications. We will stop Lasix as of tomorrow. Overall, Ben seems to be in good health. We have noticed that if we push his plasma infusions beyond 10 days or so, platelets seem to be more in the low 200 range than in the mid to upper 200s. We aren't quite sure what that means, but it is a trend and one we are going…Continue
Tristan had a great checkup with Dr. Nester last week. His BP's have been perfect, labs looked great, K+ is staying normal even without kaexalayte. Protein has come down a lot in his urine too thanks to Lisinopril. He grew a little over the summer :) I was very proud of him when he sat all by himself and had his labs drawn, all I had to do was hold his hand. Then of course he covered himself in stickers to make the owee better. We call it arm pokey. He knows what to expect now and doesn't…Continue
It's been awile since i updated on Anna. She is been doing well and enjoying gymnastics. Today we had our visit with our doctor, Annas labs continue stay where we like them too. They took her off blood pressure medication one medication less ;-) We also had disscation on some testing they did in the begining this year so she is positive for CD46 and she just below range for Factor B normal for it was 20-51 and hers is 19, so our doctor dosen't know really if that is…Continue
I want to update you all on the meeting which took place in London yesterday following the aHUS patient and family conference in June in UK. The strong feed back from the conference was the need for a patient family group and with the help of Professor Tim Goodship the meeting yesterday was to discuss and form a charity patient group. Only 6 families attended and I'm delighted to say a interim board of trustee's was elected. Please conatct me for more info
Hello everyone, we've had some news, the catherization lead to lower BUN and creatnine! Which means he needs to have his bladder stretched, this is the one test he has dreaded for years so his worst nightmare has come true, he would have preferred rejection, I think! On the other hand it is good news in that the docs think his bladder is still flexible enough to be able to stretch.
He did allow us to distract him with the world's longest Clue game in history, him vs. Team…Continue
So after yesterday's optimism, comes what we have become used to, the glitch, the bump, the puzzle. Today, most of Nathan's labs were good, I'll let Bill post specifics in his forum, but the creatnine and BUN jumped up significantly. Other labs ruled out aHUS ramping up. The first thought was rejection, so a biopsy was considered. Here usually the nephrologists do the biopsy, but because Nathan's kidney involves his peritoneum, they wanted his surgeon. Her day was rather hectic, so as…Continue
Added by Linda Burke on September 5, 2011 at 11:22pm — No Comments
We're experiencing difficulty with the "My Page" tab....entirely my fault, I'm afraid. While we work to restore this shortcut function to access your page, I'd appreciate your patience and ask that you use either the Search Bar or the 'Members' tab.
The Search bar is located above the cute colored photo bubbles of our aHUS children, look in the uper right of your screen and simply type in your name (click on the results to open your personal…Continue
Added by Linda Burke on September 2, 2011 at 10:36pm — No Comments
Well, I was listening to some music and found a song that is titled "Just Stand Up" it's dedicated to cancer, but in my eyes this song is dedicated to this disease as well, since we are all standing up to it and fighting it. If you read the lyrics you will see why. If you ever want to hear the song, there are various artists that sing it, but it is sung by Beyonce, Rhianna, Fergie, Miley Cyrus, Sheryl Crow and many others. Everytime I sing along to this song though, I end up tearing…Continue
Added by Jessica Olivia Frysz on September 1, 2011 at 11:14am — No Comments