"Hi Jodi. Thank you for your note. She seems to be doing better - - they are keeping her in the hospital and observing. Such a scary disease. Good to hear that the kidneys continue to improve over…"
Janet Punty's Discussions
Getting help from US experts to out of country (Japan) hospitals
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Has anyone had experience with international hospitals? We are running up against an issue in Japan where they will not package up diagnosis and tests and results so they can be shared with other…Continue
Tags: second, opinions, hospitals, international, hemoglobin
Started this discussion. Last reply by Janet Punty Aug 29, 2011.
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Janet Punty replied to Janet Punty's discussion Getting help from US experts to out of country (Japan) hospitalsJanet Punty replied to Janet Punty's discussion Getting help from US experts to out of country (Japan) hospitals
Jodi Kayler replied to Janet Punty's discussion Getting help from US experts to out of country (Japan) hospitals"Hi Janet, I hope she is doing better. I just wanted to make a note that It is common for the hemoglobin to not respond as quickly as the platelets. Even after the disease is stopped by the Soliris, the hemoglobin can still continue to decrease…"
Janet Punty replied to Janet Punty's discussion Getting help from US experts to out of country (Japan) hospitals"Thank you for this information. I know the hospital was in touch with the drug company, but I will pass this info on to her parents. for the patient information........................"
Linda Burke replied to Janet Punty's discussion Getting help from US experts to out of country (Japan) hospitals"1-888-SOLIRIS is the number mentioned by Cheryl. Perhaps your niece's care team has already utilized the 'Doc to Doc Directory' on the Home Page to see if other physicians have advice..... I'm not sure what could be…"
Cheryl Biermann replied to Janet Punty's discussion Getting help from US experts to out of country (Japan) hospitals"Oh boy, all I can suggest would be just conjecture on my part...first Alexion, the drug co. that produces Solaris has a 1-800 number for patients to call. I would have your nieces parents call that number, I think it's on our front page…"
Janet Punty posted a discussionGetting help from US experts to out of country (Japan) hospitals
Has anyone had experience with international hospitals? We are running up against an issue in Japan where they will not package up diagnosis and tests and results so they can be shared with other specialists? Very frustrating - - has anyone come up against this and if so, how did you get cooperation? My niece is in Japan - was in intensive care for 4 weeks - in a regular room now but they still have issues where her hemoglobin goes up with Solaris but eventually goes back down into the 5…See More
Janet Punty left a comment for Linda Burke"thank you for the warm welcome. Definitely new to this - - our niece is 7 and still in the hospital - she spent 4 weeks in ICU in Tokyo and is now in a regular room for the past week. Solaris was administered twice so far and…"
Janet Punty left a comment for Linda Burke"Thank you Linda. We will research Epogen/Aranesp. I appreciate your help. We are waiting for the results of a kidney biopsy and they did a brain MRI which was ok......from some of what i have read some…"
Cheryl Biermann left a comment for Janet Punty"Hi Janet,
Welcome, feel free to join in disucussions as interest you."
Linda Burke left a comment for Janet Punty"Hi Janet,
Welcome to the website. You might wish to look for information regarding Epogen (aka 'epo') or Aranesp, and do feel free to blog about your niece and ask if others have had similar experiences."
Profile Information
- Birthday
- April 17
- 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 it does not involve business - we have a 7 year old fighting for her llife in Japan - please we need info
- My child ( or myself as a patient) is best described as:
- Tested but Results are Inconclusive
Comment Wall (2 comments)
- At 10:36pm on August 11, 2011, Cheryl Biermann said…
Hi Janet,
Welcome, feel free to join in disucussions as interest you.
- At 10:21pm on August 11, 2011, Linda Burke said…
Hi Janet,
Welcome to the website. You might wish to look for information regarding Epogen (aka 'epo') or Aranesp, and do feel free to blog about your niece and ask if others have had similar experiences.
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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.
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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...
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