The Atypical HUS Foundation

debbie thelwell
  • Female
  • cheshire
  • United Kingdom
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debbie thelwell's Page

Profile Information

Birthday
December 6
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
no personal
My child ( or myself as a patient) is best described as:
C3 (C3)

Debbie thelwell's Blog

Low level complement activity

My son is having reoccurring issues with his stomach sometimes with a puffy face.last week his vision went blurry he had a puffy face then was off school with stomach ache and feeling sick for 2days. His face is still puffy and he's complaining it hurts. Should I be concerned, I'm not sure if this is low level activity or not .has anyone else had similar issues

Posted on February 7, 2013 at 3:40pm — 5 Comments

patient and family meeting In London 10-9-2011

 Hi All

 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

The…

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Posted on September 11, 2011 at 5:11am — 3 Comments

Meeting in London family Patient support group

Following on from the conference in Newcastle England

aHUS Patient Family Support Group on Saturday 10th September in London.

 

Posted on August 6, 2011 at 5:10pm — 2 Comments

Comment Wall (5 comments)

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At 2:00pm on February 12, 2013, jemma kilty said…
Hiya Ellie's being treated under dr mark Bradbury. She's been today and goes every 2nd Tuesday, thankfully she seems to be doing really well. How's your son getting on? X
At 3:16am on July 16, 2011, KAY YEOWART said…
Hello, Yes it was me. Have you heard any more since the conference? We haven't but maybe we have missed something. Hope all is well with you.
At 6:16pm on June 17, 2011, Kelly Crumbaker Hubbard said…
Hi Debbie! Our son Kegley has been sick 2x with aHUS, in 2005, 2007. Kegley was diagnosed with the MCP mutation in August 2007.  --- he has not required hospitalization since then but we did feel that Motrin may have irritated his system and we have not given him any since 2007. I would love to communicate with you in case we have knowledge that would help each other in the future.   Kelly
At 11:53am on June 15, 2011, Cheryl Biermann said…

Hi Debbie,

 

Welcome to the website, and please feel free to join in any of the discussions/forums, we look forward to hearing from you.

At 10:44pm on June 14, 2011, Linda Burke said…
Welcome to the website, Debbie.  Glad that the Newcastle aHUS parent's conference was productive, we hope that you'll find this site a good resource.  If you look above the colored bubbles, you'll find a Search bar.  There's a bit on this site about the MCP mutation, so try a search to see what's already available - you're always welcome to post questions, too.
 
 
 

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