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Zofia's Page
Latest Activity
Zofia commented on Stacey's blog post 'Riley's progress'
So happy for You :)
Zofia commented on Linda Burke's blog post 'Dr Goodship announces 1st aHUS Patient-Family Conference in UK'
We hope to attend, too.
Svetlana Finley commented on Zofia's blog post 'hospital....'
Hi Zofia
How is is Anja doing today? Is there possible to get Soliris for her? Anna had plasmapheresis and is not fun, specially, no sport or even getting wet. Our Anna is doing ok, she is been having colds and today her labs are a…
Jessica Olivia Frysz commented on Zofia's blog post 'hospital....'
Zofia,
I'm so sorry to hear about Anna. Sometimes these things just happen I'm afraid, it's how the disease works. But, this disease tends to work in different ways in many different patients. I've been living with…
Theresa Pereira commented on Zofia's blog post 'hospital....'
Anna will be in our prayers.
How is she doing?
Maybe you should consider Soliris if available?
Sending hugs....
Grace commented on Zofia's blog post 'hospital....'
I'm so sorry to hear that Anna has not been doing well. What a difficult time for her and all who love her! I hope you are getting the answers you need and she is on the road to better health.
When you say plasmapheresis did not work well…
Zofia commented on Zofia's blog post 'hospital....'
Hi Destiny,
is plasma exchange a different name for plasmapheresis? Do your daughter has both: AV and infusion port at the same time? Why? Is placing the AV in arm comfortable? Ania used to have them in her chest, and it was not comfortable at all.
Destiny Floyd-Rakes commented on Zofia's blog post 'hospital....'
We are sending Anna and your family lots of prayers. My daughter had an AV placed in her left arm and that is what she uses for her plasma exchanges and she gets that done twice a week. She also has an infusion port because I felt a lot like…
Giovanna caputi commented on Zofia's blog post 'hospital....'
Cara Zofia vi siamo vicini e pregheremo per lei.
Linda Burke commented on Zofia's blog post 'hospital....'
Hi Zofia,
Sorry to hear things are not going well....how did your talk On Monday go with Anna's doctors? Will they consider Soliris for her? Is it available in your country?
Amy Swarbrick commented on Zofia's blog post 'hospital....'
Anna is in our prayers. Ditto Jonathan's comment... One child and their family suffers, we all do. We know the pain, heart ache, the stress. My heart goes out to you guys.
Jonathan Aguallo commented on Zofia's blog post 'hospital....'
We are praying for Anna and your entire family..... It is as if we all feel the pain when any of these kids with aHUS are relapsing and in trouble.......
Cheryl Biermann commented on Zofia's blog post 'hospital....'
Ah, okay, so she did have a long period of being okay, that is a relief. I would still keep them to what worked the best, timing wise instead of pushing it. We were, under doctors advice, always pushing further out, and it only resulted…
Profile Information
- Birthday
- July 8
- 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:
- Tested but Results are Inconclusive
Zofia's Photos
Zofia's Blog
hospital....
Things aren't going well for Anna recently. She is in hospital now, and it is her third stay in hospital this month. She used to take FFP once for two weeks, and now even twice a week seams not enough. Docs consider changing her therapy from FFP infusions to plasmapheresis. I don't like the idea at all. It would be necessary to put her catheter back and that would make an enormous change in her live. We are scared because we can't find any reason for such change in her condition. Please…
ContinuePosted on February 19, 2011 at 6:00am — 13 Comments
update on Ania
Ania is doing pretty well. We just extended time between getting FFP to 14 days.The Doc. doesn't want to extend it any more, but I do want to try. Her Creatinine is 0,7 BUN 33. Her BP is about 100/60. Her… Continue
Posted on November 2, 2010 at 4:51pm — 6 Comments
TTP
Is any body here struggling with TTP (Thrombotic thrombocytopenic purpura)? My friends douther just got her tests results, and it is not HUS, but TTP.
Posted on October 14, 2010 at 1:46pm — 4 Comments
update on Ania
Ania is doing well. She just turned 8 on Aug. 26th. She gets FFP
every twelve days, but we will try to extended times between getting FFP to 14 days and even more. She is on ramiprilum, losartanum kalicum,… Continue
every twelve days, but we will try to extended times between getting FFP to 14 days and even more. She is on ramiprilum, losartanum kalicum,… Continue
Posted on August 30, 2010 at 4:43am — 2 Comments
Comment Wall (11 comments)
- At 9:41pm on December 7, 2010,
Linda Burke said…
- I hope Ania is doing better now - please keep us posted. Fingers crossed for a rapid return to better health!
- At 12:00am on November 12, 2010,
Cheryl Biermann said…
- Oh, so happy to hear it! Good luck Ania and Happy belated Birthday!
- At 2:04am on November 5, 2009,
Christy said… - Hey there! Thanks so much for your comment on Aiden's story. Proving that vaccines triggered Aiden's AHUS onset is difficult at best, but we know that he was absolutely fine before the vaccines (one of which was a live vax) so it stands to reason. In our eyes, vaccines are not safe across the board but we know that some are necessary. For now Aiden is waaaay behind on vax but since his kidneys were removed last month it may actually be the best time for us to get him the one's that are absolutely necessary...no kidneys left to attack. :( It's hard to make decisions about vax...when does the risk outweigh the benefit?! Prayers to you and yours :)
- At 11:45am on October 27, 2009,
Sylwia Antkowiak said… - Dzien dobry , czy moge mowic poprostu Zofia? Chyba tak bo tu i tak wszyscy sa przyjaciolmi i dobrze sie znaja. Widzialam ze jest tez i ktos z Polski i nawet mialam napisac ale zawsze na wszystko malo czasu. Widzialam ze jestescie z Gdanska a my w tym roku bylismy tak blisko bo w Lebie, szkoda ze sie wczesniej nie poznalysmy... Nie wiem od czego zaczac. Ciesze sie ze znalazlam te strone bo to tak rzadka choroba ze malo jest ludzi ktorzy to zrozumieja tak do konca. Nasza Maje to uderzylo rok temu i bardzo szybko doprowadzilo do utraty nerek. Teraz z niecierpliwoscia czekamy na wyniki badan nad Soliris choc nas interesuje juz tylko czy mozna to zastosowac u przeszczepianych ludzi a tego jeszcze dokladnie nie wiedza Zastanawiamy sie tez nad podwojnym przeszczepem ale to wydaje nam sie za ryzykowne. Powiedzieli ze jest okolo 15% przypadkow smiertelnych. Nie chce tego slyszec. No i tak jakos leci. Do dializ sie jakos przyzwyczailismy , czlowiek chyba do wszystkiego sie moze przyzwyczaic, choroba poszla w uspienie bo oczywiscie nie ma nerek, Maya ma sie dobrze, chodzi do szkoly, smieje sie , szaleje i czasami czlowiek zapomina ze w ogole cos jest nie tak. Bardzo bardzo sie ciesze ze nawiazalysmy kontakt, napisz prosze cos o was, mam nadzieje ze nie bedzie tu mial nikt za zle ze piszemy po polsku, caluje was mocno..sylwia
- At 3:17pm on October 24, 2009,
Jessica Olivia Frysz said…
- Welcome to our website Zofia. If you ever had any questions, please don't hesitate to ask, we are all here to help each other. And, I'm honored that I was an inspiration to you with my story.
- At 2:58pm on September 26, 2009,
Sara Palmer said… - Hi thank you for expressing your thoughts I appreciate it.
- At 10:57am on September 22, 2009,
Svetlana Finley said…
- Anna would like to stay in touch with your Anna, if she wants to write to her Anna would love it ;-) It is awesome to know that there is other girls have it. Anna had hard time last year, then we met another family who had daughter that was just diagnose with it last year. They doing great with out any plasma. Anna and her staying in touch with each other.
Do you have blog? Did your doctors tried to go longer then every week with plasma? Our doctors right now will, be trying to stop her treatment by Christmas.
- At 11:04pm on September 21, 2009,
Linda Burke said…
- Welcome to the interactive website of The Foundation for Children with Atypical HUS where patients, families, and investigators dealing with aHUS can share information and experiences. The informational site at www.atypicalhus.50megs.com provides clear and comprehensive information about aHUS and this site will help you explore the myriad aspects of the disorder from the insights of other patients and their families. We look forward to your participation.
- At 5:25pm on September 21, 2009,
Cheryl Biermann said…
- Hi Zofia! It's great to have you on board. My husband's maternal grandmother was Polish, MMM what cooking! We'll look forward to hearing all about your story. Hope things are going well now.
- At 10:43am on September 21, 2009,
Svetlana Finley said…
- I was born in Russia and move to US 16yr. ago, even been here this long i still don't spell correct sometimes ;-) Still trying to travel to Russia when i can. Don't worry about spelling, everyone still can understand.
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 "About aHUS" tab 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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