"Thank you Cheryl, have already been given plenty of tasks to 'get stuck into' since becoming a trustee which is good to be helping in some way. I feel proud to be part of something that is helping patients just like me and am honoured to…"
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Lisa Barker
- Female
- Stoke On Trent
- United Kingdom
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- Discussions (19)
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Lisa Barker's Discussions
Seminar at House of Parliament Jan 17th
7 Replies
Hi i was wondering if anyone who was attending this had received their invite yet?Continue
Started this discussion. Last reply by Cheryl Biermann Jan 20.
UK aHUS Patients
39 Replies
At such a crucial time in the UK with regards to getting funding for eculizumab it is important for patients and their families to do as much as possible to help this along.At the moment there are…Continue
Started this discussion. Last reply by Lisa Barker Apr 7.
Patient Survey
7 Replies
I have been asked to try and find any patients or families of aHUS sufferers who are willing to complete a patient survey to help us in our fight for funding/ approval of the ecluzimab drug (UK)…Continue
Started this discussion. Last reply by Len Woodward Oct 8, 2011.
Lisa Barker's Page
Latest Activity
Cheryl Biermann replied to Lisa Barker's discussion UK aHUS Patients"Good luck and congratulations on Lisa's inclusion as a trustee! I'm marking my calender and will say a little prayer for this."
Len Woodward replied to Lisa Barker's discussion UK aHUS Patients"A short update on aHUSUK:
the Patient Voice submission will take place throughout April. 14 people will be interviewed including patients carers and family members. The final report will be reviewed by aHUSUK in early May and a…"
Len Woodward replied to Lisa Barker's discussion UK aHUS Patients"An up date on eculizumab in Scotland.
Disclosure on the Scottish Medicines Consortium website reveals that it is not recommended.
aHUSUK is looking into the reasons given for that view."
Len Woodward replied to Lisa Barker's discussion UK aHUS Patients"Also written to the BBC Radio to ask for Tricky Britches song " A Rare One" to be played on Rare Disease Day.
You never know!"
Len Woodward replied to Lisa Barker's discussion UK aHUS Patients"A quick update on aHUS matters in the UK:-
The e petition has been going up by leaps and bounds recently and is now just short of 2200 signatures. Given the more popular issues ( with the media) we do well to keep it ,with a small but active…"
Len Woodward replied to Lisa Barker's discussion UK aHUS Patients"A lot has been going on in recent weeks so time for a quick update about aHUSUK:
the IGM is tomorrow and a substantial number of members are attending for what should be a busy,interesting and helpful event;
the Seminar last week in…"
Cheryl Biermann replied to Lisa Barker's discussion Seminar at House of Parliament Jan 17th"Thanks Lisa,
If anyone is aware of video, you can let it be known we would love to add it here and on the rare disease platform also!"
Lisa Barker replied to Lisa Barker's discussion Seminar at House of Parliament Jan 17th"Im not aware of anyone videoing it but they may well of done, i know cameras were not allowed in there so im not sure. x"
Cheryl Biermann replied to Lisa Barker's discussion Seminar at House of Parliament Jan 17th"It sounds like y'all had a wonderful time, did you video the speakers? It would be wonderful to have the video for our site."
Lisa Barker replied to Lisa Barker's discussion Seminar at House of Parliament Jan 17th"The seminar proved to be a successful turnout and to listen to Vera and Emma's quite different experiences was an honour. I am so glad i went and feel very proud to be friends with such strong willed people."
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…"
Lisa Barker replied to Lisa Barker's discussion Seminar at House of Parliament Jan 17th"I never got mine debbie, for some reason i cannot accept emails from ahus group and cannot send them to them either they always get returned. Emma Woodward has kindly forwarded me the email so know whats happening . See you there hun. x"
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"
Lisa Barker posted a discussionSeminar at House of Parliament Jan 17th
Hi i was wondering if anyone who was attending this had received their invite yet?See More
Profile Information
- Birthday
- January 15
- Do you have a friend or family member diagnosed with aHUS?
- No
- 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.
- ???????????
- My child ( or myself as a patient) is best described as:
- Interested in Undergoing Genetic Testing, Tested but Results are Inconclusive
Lisa Barker's Photos
Comment Wall (9 comments)
- At 5:52pm on June 16, 2011,
Helen Macqueen said… Hi Lisa,
It was good to meet you and your husband last weekend. There are certainly signs of hope on the horizon for people like yourself.
We obviously found the conference gave us a lot more information about aHUS but some of this made us realise that our daughter Abi could well have been there too if she had been given Eculizamutab eariler than she did.
We will be having genetic testing as soon as it can be arranged as we need to know if Ishbel or Calum are at risk.
I hope we will see you soon xx
- At 7:13pm on May 5, 2010,
Sylwia Antkowiak said… - Hi Lisa
Welcome to the site. We live in London and its my 6 year old daughter who is affected by AHUS. She is currently on PD. We are waiting for the Soliris trials to start on children and the provisional plan is to use it during the kidney transplant. She is being treated at Great Ormond Hospital and the doctors here are fantastic. Your daughter is gorgeous and I admire your courage and I am really impressed that went with pregnancy while on dialysis.All the best...
- At 1:18am on April 29, 2010,
Svetlana Finley said… - Hi, Lisa
Welcome here!! I am glad to hear that even been on dialysis u had awesome baby girl. How old is she? My daughter who is almost 12 doesn't show any sign of genetically wrong, she relapsed several times, but results coming back normal. Do u planing to try get transplant with Soliris?
- At 6:21pm on April 28, 2010,
Grace said…
- Welcome Lisa! I'm going on 29 and was diagnosed with aHUS almost ten years ago. Your daughter is precious! I know she must bring you much joy. I'd love to hear more of your story.
- At 5:53pm on April 28, 2010, Cheryl Biermann said…
- Wow, Lisa, congratulations on the birth of your beautiful daughter! I am really sorry to hear your story with aHUS was so violent, no wonder they initially thought it was E-Coli...I see you have had some genetic testing, but it may be worth your while to have your docs take a look at the doc to doc registry and find out if your testing has been on all of the known causes, however, even with complete testing, many of our members still have unknow reasons. You may also want to have your child tested, we had our daughter tested who is many years younger than our child with ahus. Our older kids haven't been tested because the theory is they would have shown signs by now...not to say we don't closely monitor them when they are sick!
How do you feel, are you peeing okay? How's your appetitie, what color is your pee? They think we're nuts!
Thanks for the offer to mentor us, we look forward to getting to know you and welcome your input.
- At 2:13pm on April 28, 2010,
Phyllis Ann Talbot said… - Hi there Lisa - welcome to this site! I'm so sorry you have to deal with this awful disease but I'm very impressed with how positive you sound! Your daughter is BEAUTIFUL and is obviously a blessing - I'm SO impressed you had a successful pregnancy on dialysis! My son actually has AHUS - Factor H - he's 3 1/2 and has been sick for a little over 2 years and has been on peritoneal dialysis since June of 2008. We are also in a holding pattern - hoping to do kidney transplant along with Eculizimab (Soliris) once there's some more info available. Thanks again for sharing your story!
- At 4:53pm on April 27, 2010, Lisa Barker said…
- A proffessor in the university of Newcastle is currently working on some of my blood and he keeps me informed of any progress which is really good. I now dialyse from home and have my own room attached to the house. I self needle and currently dialyse every other day for 3 1/2 hours but am going to be increasing to 6 times a week. I have also tried peretonial dialysis and had a succesful pregnancy on dialysis so feel free to talk to me about my experiences. I am a positive person who has great support from my family...let me help support you!!!
- At 4:52pm on April 27, 2010, Lisa Barker said…
- My name is Lisa and i am 30 years old. I have end stage renal failure and am on haemo dialysis with no plan of transplantation. I became unwell 6 years ago and at the time no one knew what was wrong with me. I woke up one morning with what i now know was a migraine and felt really unwell. After two days i kept being sick and had diarrohea, i couldnt keep food or drink down and my GP diagnosed a virus. A further two days on and i had stomach pains from being being so sick so a different GP sent me to hospital for some blood tests. When the tests come back it showed my platlets were severly low and my HB was only 4. I gave a stool sample but this came back negative for ecoli or anything elseAt this point i dont really remember much but i had emergency lines put in my neck and was put strsaight onto dialysis. My mum was told i had 24 hours to live, at this point we still didnt know what had caused my kidneys to fail. After 5 weeks in hospital i was told they thought i had HUS and that there was a chance my kidneys may recover but if they did this would have to happen in the next 3 months. Unfortuntaley this didnt happen so i started the work up for a transplant. The HUS came back and the transplanted kidney was yet again attacked which means i am now classed as having recurrent HUS. My bloods have been tested but they cannot find which gene is the "faulty" one so i cannot tell where i got it from or if my daughter has it .
- At 7:41pm on April 26, 2010,
Linda Burke said… - Hi Lisa,
Welcome to the interactive website of The Foundation for Children with Atypical HUS. From your profile information, I gather that you are an aHUS patient who has already had genetic testing , but perhaps that's an incorrect conclusion on my part. As you look over the site, feel free to post your story along with any questions you might have for the members of this on-line aHUS community.
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.
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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...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
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