Cheryl Biermann's Page

Dear Cheryl,

thank you for the welcome and I hope that our friendship will be for the mutual benefit.

Best Regards

Thank you! I visit the web site you recomended me, it is also interesting. I am glad that I can communicate and share expirience and problems to you and others peoples, it is much more easier to live with it. I will continue to communicate with you at this site. I apologise for my gramatic mistakes. See you

I received and accepted your invitation to become a friend. I have been exploring the foundation's website since during the time in August when Hannah was in ICU for so long, and I have forwarded information and links from it to Hannah's doctor. It's a wonderful resource.

I was especially interested in the information you sent Danna. Is there a place we can see the latest thinking about aHUS and continuing Solaris? I see on their own website references to when Solaris is discontinued, but I see nothing at all about recommendations of exactly when or even whether Solaris is to be discontinued or the frequency of infusions drastically reduced.

With the drastic changes in the outlook for patients now that Solaris has been approved, where is tracking being done about the course of treatment and outcomes, relapses, and resumption of treatment?

Was there a study that found that even with Solaris treatment, the disease remains there, more or less lurking and ready to become active if the drug is reduced or stopped?

Hi Cheryl, I'm Kaye Vaughn, grandmother of Hannah, the aHUS patient, and mother-in-law to Danna Vaughn with whom you have corresponded recently. I'm interested in a reply you sent Danna recently regarding the current thinking on staying on Solaris and about scientists thinking there is low-level activity that cannot be detected. I would very much like to read all about that. Can you please share the source? Hannah was originally scheduled to begin taking Solaris less frequently in February, but her physician is at this point undecided about reducing the frequency. Thank God, Hannah continues to do very well with her infusions and is generally thriving.

Just checking in to see how Nathan's been doing - hope things are settling down a bit after the infusion.

Hey cheryl hows nathan doing?

Thank you! On the front end, it doesn't look like there is anything to be "at ease" with! Soooo, knowledge is power. I appreciate your willingness to share your experience.