"Hi my son regularly complains of stomach ache on a bad day he will Geoff his food lethargic and then I start to worry but usually after 24-48 hrs he's ok
Not sure if it's connected
Debbie"
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debbie thelwell
- Female
- cheshire
- United Kingdom
- Blog Posts (2)
- Discussions (26)
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debbie thelwell's Page
Latest Activity
debbie thelwell left a comment for jemma kilty"Hi Jemma
How old is your daughter my son is under royal Manchester he has MCP genetic mutation"
debbie thelwell posted a status"Well we got the results back on Monday my daughter and husband don't have MCP but I do :("
debbie thelwell posted a status"Have anyones kids episodes started with an itchy rash stomach ache and feeling sick josh is Away skiing and is feeling unwell"
debbie thelwell replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods""
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debbie thelwell replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods""Hi guys
Josh was sick at school on Thursday so Friday morning I spoke to the hospital as I was conserned there might be low level activity going on as he hasnt been 100% for a few weeks He spent the day on the ward whilst we waited for his blood…"
debbie thelwell replied to Cheryl Biermann's discussion Taking the dread out of the hospital visits"Thanks Cheryl this is really useful defiantly give the pound shop as we call them a go!
Debbie x"
debbie thelwell is attending Len Woodward's eventLen Woodward at Holliday Inn
January 28, 2012 from 10:30am to 4:30pm
Inaugural General Meeting of aHUSUKAn opportunity for members to influence the plans and activities of the Patient and Families Support Group and to get information about aHUS from guest speakers.See More
debbie thelwell replied to Lisa Barker's discussion Seminar at House of Parliament Jan 17th"Lovely to meet some of you today a moving and powerful message I hope was portrayed and will help to make a difference.Both patient speakers moved me to tears! Lets hope we all get the specialist service and treatment we are all hoping for it will…"
debbie thelwell replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods""Thanks he seems ok to date but will defiantly take on board your comments were still trying to get to grips with living with AHUS he gets really upset going into hospital so avoid if possible. Thanks as always this website is a great support and…"
debbie thelwell replied to Bill Biermann's discussion Is there such a thing as "Atypical HUS Free" or "Remission periods""I'm really interested in this theory as my son has been mildly Ill before and after Xmas with slight protein leak, pale, lack of energy and low fluid intake and out put, after two days of rest he seemed ok. With mcp mutation i thought we were…"
debbie thelwell replied to Lisa Barker's discussion Seminar at House of Parliament Jan 17th"Hi Lisa
yeah mine came through last week have you received your yet?
Debbie"
debbie thelwell is attending Len Woodward's eventParliamentary Seminar on aHUS in the UK at Houses of Parliament
January 17, 2012 from 12pm to 2pm
A seminar for UK MPs, Peers, aHUS patients and others about aHUS, its treatment and the need for national commissioning and funding. See More
debbie thelwell replied to Lisa Barker's discussion UK aHUS Patients"We will with such energy drive and passion to speak out we will be heard. We all have different stories to tell and all want to make a difference to other peoples lives because this has had such a devastating effect on ours. Merry Christmas to you…"
debbie thelwell replied to Lisa Barker's discussion UK aHUS Patients"What a good idea will distribute to family and friends at Christmas. So pleased that its doing so well January looks a busy month I need to book my train tickets to London.
I hope more people come forward and join us we need to come together to make…"
debbie thelwell replied to Lisa Barker's discussion UK aHUS Patients"Really pleased everything is moving in the right direction looking forward to catching up in january debbie"
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
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…
ContinuePosted 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 (4 comments)
- 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.
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
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