Haven't posted any labs since starting Soliris - Ryan was pretty stable when we started and nothing much has changed, all is going well :)
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Heather Still
- Female
- Madison, NY
- United States
- Blog Posts (7)
- Discussions (22)
- Events
- Photos (33)
- Photo Albums (1)
- Videos
Heather Still's Page
Latest Activity
Finally started Soliris last Friday. All went well. Will post some labs after this Friday if I think of it :)
Status posted by Heather Still
Heather Still commented on Bill Biermann's blog post 'FDA Approval for Soliris (Eculizumab) REJOICE !'
Thanks to everyone, including all of our aHUS community, that worked so hard to get us here. I can remember my first phone call to Bill Biermann when Ryan got diagnosed 9 years ago, at that time their family was the only contact I could…
Heather Still commented on Cheryl Biermann's blog post 'cahterization leads to better numbers'
So happy to hear the great report. He's a trooper so I'm sure he'll get through the bladder stretching like a pro. Thinking of you all often. Take care!!!
Heather Still commented on Cheryl Biermann's blog post 'Nathan's update'
Thinking of you guys today!
Melissa Hearn commented on Heather Still's blog post 'Ryan's Hope 2011 cancelled'
Good luck with the Nursing Program Heather! I'm sure you'll do GREAT!
Heather Still commented on Phyllis Ann Talbot's blog post 'The good, the bad, and the ugly'
Praying for all good things for you guys......I would love to meet Hyde someday - he sounds like quite the little character. LOL
Linda Burke commented on Heather Still's blog post 'Ryan's Hope 2011 cancelled'
Wishing you the best in your many upcoming endeavors....please thank your friends and family for their many past golf tourneys to benefit aHUS!
Cheryl Biermann commented on Heather Still's blog post 'Ryan's Hope 2011 cancelled'
Thank you for all the years of financial help, and please enjoy a well deserved break. We'll hold you to your prediction, however!
Ryan's Hope 2011 cancelled
After careful consideration our family has decided that we won't be able to host our annual fundraiser this year. I am entering the Nursing Program full time at a local college and my mother in law's plant that she works at is closing down right at golf tourney time so her time will be restricted also. We decided that we would rather cancel the tournament than to put on a ho-hum event that will disappoint our faithful supporters. I hope this doesn't impact the foundation financially and we…See More
Blog post by Heather Still
Heather Still updated their profile
Heather Still commented on Bill Biermann's event '2011 Parent Conference'
I agree with Crystal. I usually fly into Cedar Rapids just to save myself the drive because it is only a slight difference. Looking forward to seeing a great turn out this year!!!!
Profile Information
- Birthday
- November 10
- 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 H (CFH) Protein(Gene), Factor I (CFI), MCP (MCP)
My name is Heather Still. I have been married to my loving husband, Jim since 1998. We have two children, Ryan and Kayla. Our son, Ryan, has battled Atypical HUS since 2002. He is a very rare case having mutations in MCP, Factor H, and Factor I. Ryan is now 12 years old and still maintains about 50% kidney function. When first diagnosed he needed frequent plasmapheresis in order to slow the attack. After several weeks of daily exchanges we slowly weaned him day by day to biweekly after a couple years. Once his labs remained stable we began plasma infusions. First a few times a week and slowly weaned him to biweekly infusions. We tried to decrease that frequency a couple of times and ended up with strong aHUS activity again. So he has needed biweekly infusions and has remained fairly stable with them for a few years now. He is on 5 blood pressure meds, iron, folic acid, and gets a monthly dose of Aranesp to help him produce RBC's.
I am very excited about this website and look forward to meeting new families and helping each other through our daily struggles. I have been an active member of the Foundation for Children with Atypical HUS since Ryan's diagnosis. My family does an annual fundraiser earning $10K-$13K each year. For the last 6 years it has been a golf tournament. The money we earn is just a small piece of the foundation which funds genetic testing and research.
I am always readily available to answer questions, share information, and just listen if anyone needs help fighting this battle. It's never been easy, but as a mom I do what I have to in order to help Ryan win his battle.
Heather Still's Photos
Heather Still's Blog
Ryan's Hope 2011 cancelled
After careful consideration our family has decided that we won't be able to host our annual fundraiser this year. I am entering the Nursing Program full time at a local college and my mother in law's plant that she works at is closing down right at golf tourney time so her time will be restricted also. We decided that we would rather cancel the tournament than to put on a ho-hum event that will disappoint our faithful supporters. I hope this doesn't impact the foundation financially and…
ContinuePosted on August 8, 2011 at 11:03am — 3 Comments
So sorry for my absence
Sorry, it's been a while since I've been on the site - people must think I've fallen off the face of the earth.
I posted pics for our golf tourney that we held late September. We raised $9000+ again this year for the foundation.
We've been toying with Ryan's infusions and tried spreading them out 4 weeks, but his lab results showed that was too long so we are going back to three weeks again. Hopefully that will keep things stable. Ryan started 6th grade this fall and it is a…
ContinuePosted on October 19, 2010 at 4:52pm — 8 Comments
A child's perspective
Tonight is the eve of Ryan's 11th birthday. I go in his room as I do every night to tuck him in and I say "You know, it was about this time of night that you told me you were ready to come out of my belly and into the world." He hides his head and says "Yeah, that was before all of this." I asked him what he meant. He said "Before all of this." and pointed to all the scars on his chest and belly from catheters and g-tubes. Of course the tears were welling in my eyes already. So I explained…
ContinuePosted on April 21, 2010 at 10:30pm — 5 Comments
BP been trending upward
Well, hopefully no big deal, but the past week or so Ryan's bp has been slowly trending upward. He usually runs 110/70 ish. Been running 120/80's and a few times including tonight he's 130/90. Doctor seems to be thinking that it may be part of a growth spurt and increase in appetite. God knows he's 10 and doesn't ever want any food that's actually good for him, the saltier the food, the happier he is. Guess I gotta start buckling down more on that. So, we're increasing a bp med and going to do… Continue
Posted on March 23, 2010 at 10:04pm — 11 Comments
Creating a better hospital experience
It's been a year now since we've had a inpatient stay with Ryan. I try not to say that out loud because I think it's bad luck, but I guess typing is really not out loud. For the past few weeks I have been following what I believe is the first patient since Ryan at our Children's Hospital with an Atypical HUS diagnosis. While reading updates on this little beauty's status I am quickly reminded of all the horrors that accompany the initial diagnosis. Not only the questions about the illness,…
ContinuePosted on February 18, 2010 at 9:17am — 5 Comments
Comment Wall (47 comments)
- At 11:06pm on July 20, 2011,
Ryan Still said… - hey mom thank you for letting me have a page on the site and I love you so I will see you tomorrow if you are on
- At 10:27am on November 11, 2010,
Cheryl Biermann said…
- That's great! Maybe it'll catch on in your area? It is so huge here, we're thinking of trying something different, but then again there are lots of golf tournaments too & no one attends dances anymore, I'm drawing a blank! Maybe if we held some kind of internet game competition?!
- At 8:44am on November 11, 2010,
Cheryl Biermann said…
- Happy Birthday, Heather!
- At 12:00am on November 11, 2010,
Linda Burke said…
- Happy Birthday, Heather! Wishing you a joyful year of relaxing time with family and friends, a year without major health worries, and a return of all the care/support/concern that you so generously pour from your kind heart!
- At 10:30pm on October 4, 2010,
Linda Burke said…
- Hi Heather,
How's school going for all of you? Hope you have time to post a couple of photos from Ryan's Hope 2010 golf tourney soon, once you have a chance to catch your breath! ;-D
- At 12:10am on September 24, 2010,
Linda Burke said…
- Thinking of you as you're putting the final push on for Ryan's Hope this weekend - you and your family/friends have done an amazing job putting this together each year. It's a major fundraiser for aHUS research dollars for The Foundation for Children with Atypical HUS......we are all so grateful for your hard work!
- At 8:20pm on July 20, 2010,
Grace said…
- Hooray for 3.5 weeks and almost four! Wishing Ryan a healthy, happy summer and beyond! (You, too!)
- At 7:47pm on April 26, 2010,
Linda Burke said…
- Wow....great news! Do your docs run a c5 complement level or functional assays (or another test) of any sort to help determine how/when to space out Ryan's infusions? How'd the big family dinner go for the Birthday Boy? Hope Ryan was pleased....many happy returns for the R-man!
- At 4:24pm on April 22, 2010,
Joey Krug said…
- He is 10 yrs. Old.
- At 11:07pm on April 19, 2010,
Linda Burke said…
- Hoping that things will quiet down soon for y'all - it's been a bumpy past few weeks for Ryan. Sending a hug, Linda
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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