"Hi, Ryan, He's doing pretty good. He hurt his arm somehow, and a couple of goofy things are going on with his labs, but he can't wait for Thanksgiving to see his cousins and goof off all night with them.
How about…"
Ryan Still's Page
Latest Activity
Cheryl Biermann left a comment for Ryan Still"hi Ryan, yes he has a page, now you all can talk without parental influence! "
Ryan Still left a comment for Nathaniel biermann"No I have not started school yet I start in one week I am not going hunting yet but I am taking my gun safety course in september. When I take my gun safety course I am going to hunt turkey, Deer, rabbits, coyotes, sqirrels,…"
Svetlana Finley left a comment for Ryan Still"she has about 6 medals and she got them before big hit with relapce of AHUS, since she is back she didnt get any yet as she was catching up of missing 2 year and relearning stuff. The next spring will be her meet and she is hopping to get medals ;-)…"
Nathaniel biermann left a comment for Ryan Still"ryan,
r u starting school yet? im not because im geting a transplant in 2 weeks [woot]. I have to have pheresis for the first time, my mom says you've had it lots of times. What's it like?
r u going…"
Linda Burke left a comment for Ryan Still"Hey, Ryan!
Hope you're doing well, just wanted to let you know that Nathan B. just came online here- please join me to welcome him to our crew. If you guys would like to start your own kids Forum, feel free to create your own space…"
Ryan Still left a comment for Sharon Madrid"Hey Sharon I have not started school yet but I am going in 7th grade in September 1st"
Profile Information
- Birthday
- April 22
- 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
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene), Factor I (CFI), MCP (MCP/CD 46)
Ryan Still's Blog
New to the site, looking to connect with other kids.
I am 12 years old and I have ahus and I like spending the night at my cousins house. Then, whenever me and my cousin get hot we like to go swimming and I like to play baseball.
Posted on July 16, 2011 at 5:42pm — 3 Comments
Comment Wall (14 comments)
- At 7:48pm on November 23, 2011, Cheryl Biermann said…
Hi, Ryan, He's doing pretty good. He hurt his arm somehow, and a couple of goofy things are going on with his labs, but he can't wait for Thanksgiving to see his cousins and goof off all night with them.
How about you? Did you feel any different after getting the Soliris? Nathan says no, but he talks a lot more now than he ever did! After Thanksgiving is over, I'll have him get in touch, it's crazy here today getting ready to have all those cousins!
- At 5:54pm on August 24, 2011, Cheryl Biermann said…
- hi Ryan, yes he has a page, now you all can talk without parental influence!
- At 11:14am on August 20, 2011, Svetlana Finley said…
- she has about 6 medals and she got them before big hit with relapce of AHUS, since she is back she didnt get any yet as she was catching up of missing 2 year and relearning stuff. The next spring will be her meet and she is hopping to get medals ;-) She is in Level 7 right now
- At 4:52pm on August 19, 2011, Nathaniel biermann said…
ryan,
r u starting school yet? im not because im geting a transplant in 2 weeks [woot]. I have to have pheresis for the first time, my mom says you've had it lots of times. What's it like?
r u going hunting soon? what do you hunt? I hope I get to go this year, turkey and deer, with my brothers and dad.
Nathan
- At 8:32pm on August 16, 2011, Linda Burke said…
Hey, Ryan!
Hope you're doing well, just wanted to let you know that Nathan B. just came online here- please join me to welcome him to our crew. If you guys would like to start your own kids Forum, feel free to create your own space for you to gather and chat. Your moms can help point out that spot for you, just don't allow any of us to title it because we old folks would probably pick some lame name (horrors...not 'Kids Korner"!!) LOL
- At 11:36am on August 15, 2011, Svetlana Finley said…
- Anna is been doing gymnastics since she was 3
- At 10:31am on August 13, 2011, Svetlana Finley said…
- Hi Ryan, my daughter Anna is 13 she also love swimming and does gymnastics. She will start her page sometimes this week. She saying Hi to you!! Have great weekend
- At 5:26pm on August 12, 2011,
Sharon Madrid said… Hi Ryan, Marissa is doing well. She has yet to start up a profile on here because she has been pretty busy with her new horse. There are only a couple weeks of summer vacation left for her, she starts 6th grade on September 1st.
Have you started back to school yet?
- At 10:28pm on August 6, 2011, Sharon Madrid said…
- Marissa said to say "Thanks" Ryan, she is going to start up a page tomorrow so she can chat with you and the other kids your age :) How's your summer going? I hope you have been enjoying it!
- At 11:33pm on July 24, 2011, Cheryl Biermann said…
Hi Ryan,
Did you see the comment he made under my page? If he had an email address, he'd have his own page too, I just need to find time to do that...
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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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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