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Heather Still's Page
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Thank you for sharing Destiny's story. Sounds like you've been through the ringer. Continue the prayers and keep going one day at a time.
Not sure of a real answer for this because Ryan hasn't had a nephrectomy. But his bp has always been an issue. He is currently on Coreg and Dynacirc and compounded Lisinopril. And wears a Catapres patch for bp too. Not sure if any of those help you,…
Great news Amy!!! Keep up the good reports.
Welcome home!!!!!
So happy that the surgery went well....thanks for the update :)
Heather,
We have established at the Women and Children's Hospital of Buffalo a Family Advisory Council. This council was established to better the care of patients and their families. I have been a member of this council since its inception. There a…
It's a totally awesome fundraiser!!! I wish I lived closer so I could get there every year. Good Luck.
Praying for your family!!!! You are blessed to have such great support in all of this. Will be looking for updates on his Carepage. Take care!!!!!
Hi Kerri,
Just wondering if the docs have any concern with the plasma exchange removing some of the Soliris from Ashley which may be part of the reason why it may be not working so well???? I know there's different meds that bind to the plasma or so…
Your positive outlook and outreach to others is a fabulous role model for the rest of us Heather - reminding us all of the importance to give hope, comfort, and support to others. I'll be sending along a (lenghty) message - know that we're all so pr…
Our first event was more family oriented like the one Phyllis does. We had a dunk tank, volleyball, and horseshoes set up. We sold hamburgers and hot dogs and did a silent auction. The auction was donated baskets. Some baskets were huge and some wer…
Profile Information
- Birthday
- November 10
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or a 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 10 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 4 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.
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 4 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
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, bu
… ContinuePosted on February 18, 2010 at 9:17am — 5 Comments
Copy of email from Bill Biermann (foundation director) looking for final counts for Fall Conference planning.
Hello All,
I hope all is quiet, and back to school for many of you.
Right now, I have 16 parents who have expressed a ‘strong’ desire to attend our Oct 17th conference. Just to reiterate the details, October 16 (Friday) is early arrival time, and the Foundation would sponsor a late dinner, around 7pm, at a nearby restaurant. On Saturday, we would start our conference at 8:30. We will finish up the day at around 4pm. The Foundation would supply continental Breakfast, lunch would be brought in,… Continue
I hope all is quiet, and back to school for many of you.
Right now, I have 16 parents who have expressed a ‘strong’ desire to attend our Oct 17th conference. Just to reiterate the details, October 16 (Friday) is early arrival time, and the Foundation would sponsor a late dinner, around 7pm, at a nearby restaurant. On Saturday, we would start our conference at 8:30. We will finish up the day at around 4pm. The Foundation would supply continental Breakfast, lunch would be brought in,… Continue
Posted on August 26, 2009 at 8:07am — 30 Comments
Infusion Today
Ryan woke up and said he's dizzy and has a headache. I'm hoping it's just the Monday blues and he was coming up with excuses to not go to school. He has an infusion scheduled for this afternoon, so I will have his lab's to see if there is anything funky going on.
Posted on June 8, 2009 at 10:23am — 2 Comments
Comment Wall (37 comments)
- At 10:00pm on March 6, 2010,
Linda Burke said…
- Please give Chloe and family our best wishes. Thanks for turning out for their fundraiser to offer support- you're the best!
- At 3:34pm on March 4, 2010,
Colette Ann Frysz said…
- Heather,
I contacted our coordinator and asked her to give me web sites she would suggest for you to get info on starting an advisory courncil. She gave me the following:
The Institure for Family Centered Care www.familycenteredcare.org , www.cincinnattichildren's.org . she said that you could google other hospitals for their websites and she suggested Children's Hospital of Philadelphia,Morgan Stanley Children's Hospital of New York - Presbyterian, The University of Colorado Hospital in Aurora Colorado and of course she gave you the site for Cincinnati Children's. That should get you started in your quest. I will pull hard copies I have of info and send them to you next week.
- At 11:19am on February 15, 2010,
Svetlana Finley said… - Praying everything goes well and Ry gets better FAST!!!!
- At 9:36am on February 10, 2010,
Colette Ann Frysz said…
- Heather,
I just wanted to congratulate you on all your efforts from your golf fundraiser. You have a God given talent that not everyone can share. I'd like to commend you for that and for sharing it with others.
I hope all is well with you and your family. I hope the winter hasn[t been too harsh there.
- At 12:40am on February 9, 2010,
Kortnee Fornetti said… - Thank you Heather! This is an amazing website! I'm so happy to have found such a great network! I was beginning to feel like we were alone in all this but it's comforting to know others have been through it!
- At 10:48pm on February 7, 2010,
lisa ann peterson said… - i usually freak out and i figured i have to leave for spokane at 8am so i have been monitoring her all day... iam never this calm but for some reason i am
- At 2:50pm on February 7, 2010,
Heather Still said…
- Wow, you're way more relaxed than I am. If Ryan had puffy face and was congested I would be rushing him off to the lab for a draw. I am very jumpy to atleast have labs drawn, but that's just me. Hope it's nothing and will be looking for an update tomorrow. Thinking of you :)
- At 2:18pm on February 7, 2010,
lisa ann peterson said…
- now shes really congested and her face is puffy.. man there is no happy medium iam glad we are heading to spokane in the morning...
- At 9:57pm on February 5, 2010,
lisa ann peterson said…
- thanks.. she seems to be feelin better.. i hope it was nothing.. we will see the docs on monday....
- At 10:42pm on February 2, 2010,
Cheryl Christine Pallme Biermann said… - Hi Candace, it's good to hear from you and that Chloe is every other day. I think one of your friends connected with my husband in the hopes of helping you out. She sounds like she's going to be a great support for you.
About
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 2010 genetic testing and treatment.
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 2010 genetic testing and treatment.
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...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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