"Hi Len,
Where do I check the Health Petitions list?
Thank you
"
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Sylwia Antkowiak
- Female
- London
- United Kingdom
- Blog Posts (3)
- Discussions (5)
- Events
- Photos (12)
- Photo Albums (1)
- Videos
Sylwia Antkowiak's Page
Latest Activity
Sylwia Antkowiak replied to Lisa Barker's discussion UK aHUS Patients"Hi Len,
I phoned Emma tonight and left her a message so hopefully I will speak to her soon.
For now I'm trying to get as many epetitions signed as I can. My friend's friend has his website with a good few thousand members and…"
Sylwia Antkowiak left a comment for Ian Mackersie"Hi Ian,
Len said in his last post that you are the person to get in touch with to receive MP letter template. I would also like to attend the seminar in January.
We are based in London, been pretty busy recently but from yesterday started to get my…"
Sylwia Antkowiak replied to Lisa Barker's discussion UK aHUS Patients"Hi Lisa,
I'm based in London and have been to Newcastle Conference. I've done survey ( not sure if not too late) and e petition. I also sent the link with e petition to my friends and colleagues.
I don't have MP letter so I would be…"
Sylwia Antkowiak 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
Sylwia Antkowiak commented on Amy Swarbrick's blog post Brody"Hi Amy, its great news that nothing is happening. With our Maya it was preorbital cellulitis which is just a bacterial eye infection and once it started it never stopped until the kidneys were gone. This disease is very very strange and…"
Sylwia Antkowiak commented on Phyllis Ann Talbot's blog post So far so good"I will keep thinking and pray for you on Monday. everything will go well!!!"
Sylwia Antkowiak commented on Phyllis Ann Talbot's blog post The time is here - we think"Fantastic news. Everything is going to be alright and soon your will begin a new , better life.../cant wait to hear your updates."
Sylwia Antkowiak commented on Sylwia Antkowiak's blog post Update on Maya,"Thank you all for your kind and supportive comments. We will get there sooner or later..but we will."
Sylwia Antkowiak commented on Donna Kolp's blog post God Is Good :)"I am so happy for you and Jonathan..It's truly wonderful news.
I would also like to thank you for your kind words to my last post.
Merry Christmas"
Linda Burke commented on Sylwia Antkowiak's blog post Update on Maya,"Thanks for your update, I am sorry that it's been so rough for Maya and you all...wishing for better days ahead for your family."
Cheryl Biermann commented on Sylwia Antkowiak's blog post Update on Maya,"Hi Sylwia,
Nathan's road on peritoneal dialysis was very rough, it worked well for about one year. Then the following summer he went to camp in Memphis, TN with other dialysis patients, came back home overloaded from too much…"
Donna Kolp commented on Sylwia Antkowiak's blog post Update on Maya,"Hi Sylwia,
Frustrating.....
Jonathan was on PD for many, many years and due to some mild calcification, we had to start Hemodialysis. Last year I was trained to do this at home, and it was the best decision! My Jonathan is 18, but needles are…"
Sylwia Antkowiak posted a blog postUpdate on Maya,
I didn't write for a long long time as there is never enough time for anything anymore but felt I need to update you on what is happening with us. I feel a little bit like Donna. Maya was stable and well on peritoneal dialysis for a long time. We've been waiting for Soliris study to start in the UK impatiently and only recently we've learnt that it is due to start very very soon. We could then go on the waiting list stright away and wait as none of us can be a live donor. But of course it would…See More
Profile Information
- Birthday
- April 3
- 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 child ( or myself as a patient) is best described as:
- Factor I (CFI), Anti-FH-Ab (CFHR1/CFHR3)
Sylwia Antkowiak's Photos
Sylwia Antkowiak's Blog
Update on Maya,
I didn't write for a long long time as there is never enough time for anything anymore but felt I need to update you on what is happening with us. I feel a little bit like Donna. Maya was stable and well on peritoneal dialysis for a long time. We've been waiting for Soliris study to start in the UK impatiently and only recently we've learnt that it is due to start very very soon. We could then go on the waiting list stright away and wait as none of us can be a live donor. But of course it…
ContinuePosted on December 11, 2010 at 2:07pm — 4 Comments
Factor I, H concentrate
When I was reading the slides from the conference I came across the above. I don't really know much about this. On the European Medicines Agency I found out that the orphan designation was granted in 2007 for the development of Factor H and it is thought that the supplementation of purified factor H would alleviate the disease. It also says that the evaluation of the effects of complement factor H in experimental models is ongoing.
It was in 2007...would anybody know whether there's been… Continue
It was in 2007...would anybody know whether there's been… Continue
Posted on November 7, 2009 at 6:45pm — 2 Comments
Maya's Story
Hi everyone,
To start thank you for such a warm welcome. I have just discovered this website and I am very excited that I can share my story with people who will understand as they are going through the same what we have to go through. Our now 5 year old daughter Maya developed aHUS just over a year ago. She had multiple plasma exchanges but they did not really bring any results. In August last year due to constant high blood pressure and fluid overload her heart dilated and she ended up… Continue
To start thank you for such a warm welcome. I have just discovered this website and I am very excited that I can share my story with people who will understand as they are going through the same what we have to go through. Our now 5 year old daughter Maya developed aHUS just over a year ago. She had multiple plasma exchanges but they did not really bring any results. In August last year due to constant high blood pressure and fluid overload her heart dilated and she ended up… Continue
Posted on October 23, 2009 at 4:45pm — 8 Comments
Comment Wall (17 comments)
- At 3:35pm on June 17, 2010,
Stacey said… - I feel the same. I emailed Dr Rees and she said she couldn't give me any information and basically told me to consult with Riley's own doctor. I hve spoken to Riley's consultnt today and he is going to research soliris more and get in touch with Newcastle who are up to date with it i think. I think they have a few cases there. We are going to Birmingham on Sunday for a week originally for transplant assessment but Dr.Brdbury (Rileys consultant) said that the nephrologists there know lots of info on ahus and attend conferences so hopefully they will be able to help too x
- At 11:17am on June 16, 2010, Stacey said…
- Thankyou for your information. I will email Dr.Lees. Are the trials starting mid year this year in the UK? The only thing with Riley is the damge has lredy been done and he is on dialysis 10 hours night so he definitely needs a kidney trnsplant. Please remind me of your dughters story. Would she need a transplant? X
- At 4:20pm on June 13, 2010, Stacey said…
- Thankyou very much x
- At 10:39am on June 13, 2010, Stacey said…
- Hi Sylwia. I am at a complete confusion over all what is going on. Does your doctor know when trials of soliris are happening in the UK? Would your doctor speak to me on the phone? Riley's consultant has researched soliris but is still encouraging as to go down the route of the dual transplant. I hate to pester him. If your doctor is persuing the route of soliris and kidney transplant that it seems he has more information than we do in Manchester. Please could you ask him/her if he would speak to myself or if he won't speak to my doctor as I really need to find out more information. What both routes really entail for the future and how the process will come about of soliris. I would be so grateful for any information you can give me as I cannot find out anything about soliris over here in the UK. Thankyou for your time. Stacey x
- At 5:55am on May 15, 2010, Stacey said…
- Hi thankyou very much for your reply. Does the Soliris completely stop the complement from working? Also i have read that the Soliris is only being trialed on children over 12. Do you have any ideas when the UK trials will start? Sorry for all the questions x
- At 4:30pm on May 14, 2010, Cheryl Biermann said…
- Hi, I just saw the discussion about transplant/Soliris. There have been two definite cases that we know of and they have been successful to date.
- At 12:57pm on May 14, 2010, Stacey said…
- Hi Sylwia, I am really intrigued to know what your doctors are planning down there. My son was admitted to hospital with renal failure last June. His kidney function is completely damaged so he is at ESRD. He is on dialysis and has never recieved any plasma treatments so i don't know much about them, but i am presuming none of that would benefit Riley anyway after his kidneys were attacked so quickly. We only found out a month ago that it was atypical hus. I have told Riley's consultant about Soliris and he is looking into it as he doesn't know much about it at all. I have told his that GOSH are also looking into it and i have told him about the doc to doc registry on this site. I just want to find the best treatment for my son whatever it may be as i'm sure everybody does x
- At 7:16am on May 10, 2010,
Elizabeth Farrell said… - Hi Sylvia
Thanks for getting in touch. How weird that our girls were in GOSH at the same time. Amy was in a side room in Victoria Ward and I rarely left her side (apart from a quick run to Costa for some strong coffee!) so I didn't meet anybody.I'm sorry Maya's episode was so severe.The more stories I read the more I appreciate just how lucky we were. I wish you all the best for Maya's treatment. She looks a very happy girl. It's so hard to talk to most people about this disease, because they don't really understand what's involved, so to be in touch thru this site is an immense relief isn't it? Hope to chat more soon. Liz
- At 10:43pm on April 29, 2010, Linda Burke said…
- Hi Sylwia,
I hope all is well with Maya and your family. Perhaps you'd like to touch base with our new UK members Lisa B and Lucinda....
- At 5:53pm on October 27, 2009,
Zofia said… - Hej:)
Też żałuję że się wcześniej nie poznałyśmy. Następnym razem zapraszam :). Moja Ania, jak może czytałaś na mojej stronie tutaj, choruje od urodzenia, ale diagnoza że to HUS zapadła gdy miała 2 lata. Też otarła się o śmierć kilka razy. Źle znosiła plazmaferezy ale na wlewach z osocza jest ok. Jest super prowadzona przez naszych lekarzy z Akademii, albo mamy niesamowitego fuksa, bo jeszcze nigdy nie musiała być dializowana, a wydolność jej nerek jest tylko trochę poniżej normy. Ma tylko poważne nadciśnienie, ale dobrze kontrolowane lekami. Jest już czwarty rok prawie na co tygodniowych wlewach z osocza i tez trudno uwierzyć patrząc na nią, że choruje. Jest też taką egzotyczną ślicznotką jak twoja :). A moja druga córa ma na imię Maja :). A twoja Maja dializuje się w domu, czy w szpitalu? Macie hemodializę, czy otrzewnową? Też czekam na wyniki badań nad Solirisem. Uściskaj Majkę, fajnie jakby się mogły poznać :) Ania poszła do 1 klasy, więc jak zacznie pisać, to będą mogly mailować do siebie:) A mów mi Zosia :).Uściski :)
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.
************************
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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