"Well done everyone that participated in raising awareness of aHUS on Rare Disease Day today! Special mention and kudos has to go to Linda Burke, Terry and Gary Craig for driving through the snow to Rhode Island to represent the aHUS community…"
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Steve Greene
- 50, Male
- Bar Harbor, ME
- United States
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Steve Greene's Discussions
MCP mutations
23 Replies
Started this discussion. Last reply by Theresa Pereira Sep 29, 2011.
Steve Greene's Page
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Steve Greene posted a status"Just watched the Rare Disease Day Live Streaming Event in Rhode Island! Wonderful turnout despite the snow -- a good time for a good cause!"
Lisa L. Brown commented on Steve Greene's video
Hunter Burke Slideshow: Turn up speakers!
"Every time I watch this, I think, why couldn't they have had something that worked for Hunter? He was such a cute little boy, clearly full of wonder. My hope is that a cure will be found, sooner, rather than later."
"Her neph is excellent and really knows her pattern too well.
He did give her platelets in past when he felt ness but I really appreciate his outlook and opinion.
He is not rushed to make drastic decisions and always thinks what is best not only now…"
"yes just monitor, she received IV fluids, medication for nausea, Tylenol if needed and Zantac to protect stomach because she doesn't eat during most of stay due to nausea and fatigue.
Her BP always remained normal. She never suffered from…"
"Olivia did relapse once again for the 5th time two weeks ago.
She was in the hospital for 6 days.
Knowing now her mutation is MCP and mildest form of HUS, we were worried but felt a little more in control and not as "panicked" as…"
debbie thelwell replied to Steve Greene's discussion MCP mutations"We have been told so, Josh had kidney failure last time but thank goodness it returned so only needed dialasis for a few days, he was given blood transfusions and not plasma. Which was good as plasma doesnt help MCP I will keep you posted of…"
"Is Soliris an option to treat MCP mutation?
At this point, I dont think even plasma is...."
debbie thelwell replied to Steve Greene's discussion MCP mutations"thats good that u have an anwser, the not knowing what is causing it is difficult. At least now you have the peace of mind that it is a mild form of MCP which of all is the better outcome. Good luck with your hospital appointment. we had…"
"After many years of waiting and many tests done in Canada, France, Germany and Italy...
They have discovered in France that Olivia has a new type of MCP mutation.
All other factors are normal and explains why she never required any plasma treatment…"
Cheryl Biermann replied to Steve Greene's discussion MCP mutations"Hi Debbie,
First of all, yes MCP does appear to occur less frequently. However, I believe you anxiety is just as justifiable as someone like us who relapsed at the drop of a hat! Be diligent. These are the steps I took…"
debbie thelwell replied to Steve Greene's discussion MCP mutations"Hi My son was diagnosed in 2009 with MCP we constantly live in fear of a reoccuring episode we have been to the hospital twice in the last 2 weeks for bloods because he's been unwell and had high protien in his urine its been so stress full any…"
Cheryl Biermann replied to Steve Greene's discussion MCP mutations"Yes, it is goofy people just do not understand this disease can strike violently at any time. I would compare it to "hidden heart \
defects When people's eyes glase over, and they get that, "here we go again…"
Kelly Crumbaker Hubbard replied to Steve Greene's discussion MCP mutations"I think that my email link is inactive.... I had to search the sight and then found your response. You are gracious as always for responding. We have not posted in a while... had a huge transition, and sometimes feel reluctant to post bc Kegley is…"
Profile Information
- Birthday
- June 4
- Do you have a friend or family member diagnosed with aHUS?
- Yes
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Searching for Information?
This website is actually what's known as a social network. It is completely searchable (more on that later). This website is an online community in the truest sense, where people can come together to discuss and share and search for information about aHUS. It is our desire that everyone with aHUS will be represented on this website and their story will be told -- either by themselves, their families, or their friends. We want to hear everyone's aHUS story.
Besides the essential… Continue
Besides the essential… Continue
Posted on June 13, 2009 at 7:34am
Who has aHUS?
There are over 300 cases of aHUS in the USA (alone). I only know that because I read it in the Did You Know section of this website. How can we get 100% of all aHUS families represented on this website in photos, videos, and stories?
Posted on June 12, 2009 at 10:52pm — 3 Comments
Comment Wall (6 comments)
- At 4:41pm on January 1, 2010,
Linda Burke said… - Happy New Year, Steve!
On behalf of all aHUS patients and families, an enormous thank you for Alpha Marketing's generous use of time, talent, and resources involved in the creation of this website. Your company's commitment to help the entire aHUS community to form a linking hub of information, inspiration, and insight has been a critical resource for education, understanding and support.
Wishing you and the entire Alpha Marketing team a healthy, happy, and prosperous 2010 !
- At 7:05am on August 24, 2009, Lisa L. Brown said…
- Steve,
Thank you for letting me know. And thank you for your appreciation, I wish I could have done more and I truly hope that Skylar does well on this new medication. I keep a picture of Hunter next to my desk which I look at all the time. I actually need one that is not related to his death, I know Linda had sent me one of him, after I has sent Hunter what was called the "Spinoza Bear" but I seem unable to find it, yet I know it it here someplace.
He and his family will always hold a special place in my heart.
Take care,
Lisa
- At 10:32am on July 28, 2009, Lisa L. Brown said…
- Steve,
I am guessing you are an uncle? Linda's brother perhaps? I so enjoyed helping the family, I wish I could have done more to help. Mine is a unique job, helping families whose children are sometimes very ill. And while I rarely get to meet any of them, I do find I connect with many, some more than others, it is just who I am.
I thought of the family all the time, even before I knew they had lost their sweet Hunter, when I had to close them. I kept trying to come up with idea's for continuing help.
Thank you for your kind words. It does mean a lot
Sincerely,
Lisa
- At 12:09am on July 17, 2009, Linda Burke said…
- It's been a month since the initial launch of this fantastic website, and we can't thank you enough for spearheading the development of this social network. Parents, families, and friends finally have an avenue to share information and experiences, and in doing so we can also form connections among medical personnel and investigators.
Some people wish to help, but few can put thoughts into actions and actively create the means for others to help themselves. Thanks to Christy White, Creative Director at Alpha Marketing, for her tireless efforts in designing this website.
And a special thanks to you, Steve, for turning your wonderful idea into a reality that helps aHUS patients and families in so many ways!
- At 10:49am on June 13, 2009, Kelly Crumbaker Hubbard said…
- Thank you so much for the input...that is so helpful!!
- At 9:30am on June 6, 2009,
Stephen Bradford Burke said… - Just finished a couple of Wii games with Sky. Really appreciate all you have done to set this up. We are planning on seeing you in Bar Harbor or here before you head south, whichever is more convenient. I know Sky would love to see the girls and obviously Linda & I want to get together before you go.
I am spreading the word about this site right now. Thanks Steve.
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.
• • • • • • • • • • • •
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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