"Happy Birthday Colette! I understand all the frustrations totally, but we just keep moving forward. I can only hope things will turn around."
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Colette Ann Frysz
- Female
- Buffalo, NY
- United States
- Blog Posts (12)
- Discussions (18)
- Events
- Photos (2)
- Photo Albums (1)
- Videos
Colette Ann Frysz's Discussions
What are the aHUS triggers? Is there any recent research identifying them?
10 Replies
Started this discussion. Last reply by Colette Ann Frysz Oct 23, 2009.
Parenting a child on dialysis
7 Replies
Started this discussion. Last reply by Gene Billingsley Oct 21, 2009.
Colette Ann Frysz's Page
Latest Activity
Dana M Simone commented on Colette Ann Frysz's blog post update"Happy Birthday Colette! Thank you for sharing your reflections and using your birthday wishes to ask for a brighter future for all families dealing with aHUS."
Colette Ann Frysz posted a blog postupdate
Today is my birthday. Not often do I share that information. But today has got me reviewing. So I've had occasion to review the last twenty years to myself and now to you. We've come a long way and somehow we've also gone backward. In twenty years we've had a significant break through in treating aHUS. There is now hope for my daughter to get a kidney and keep it. She's waited 20+years for that to happen. In the last 20 years I've seen our society take steps backward in how we view…See More
Colette Ann Frysz replied to Cheryl Biermann's discussion Transitioning"I think having a transition seminar would be a great thing for dialysis patients going from a pediatric unit to an adult unit. Jessica and I have had our ongoing battles with her adult unit. They could take lessons from a pediatric…"
"Cheryl-
I am glad to see that you see what my mom and I have experienced. Most of the patients I have dialyzed with at my former unit had no goal to accomplish much of anything, they wanted life handed to them out of sympathy. While I…"
Cheryl Biermann commented on Colette Ann Frysz's blog post Just a note"She is making fantastic strides! It is obvious Jessica is far more independent than the 21 year olds I see in dialysis. Most of them have quit school as soon as they were able to. (I'm talking about long-term…"
Colette Ann Frysz posted a blog postJust a note
It's been a long time since I've updated. I'm in the midst of having my daughter with HUS begin her life by herself as a funcitoning productive adult. I house many many thoughts about how this will all work out. I house even more worries. She graduates in May and this in itself is such a big accomplishment. She will have her bachelor's in Vetrinary Technology. Not an easy program but she so loves the course. In trying to be her sounding board for possible jobs and locations we have to…See More
Colette Ann Frysz left a comment for Linda Burke"Linda, - Congratulations on your recognition!!! It is well deserved."
Colette Ann Frysz left a comment for Jonathan Aguallo"Jonathan, I'll be happy to answer whatever questions you may have. I'll answer as best as I can whatever you ask."
Colette Ann Frysz commented on MARCIA AGUALLO BAKER's blog post Ben has the Factor H gene mutation"Marcia,
Just to let you know, my family and I are all Factor H deficient. Jessica has atypical HUS. However I also had a rare disease which after much prodding I found is also a factor H deficient disease. It is Guillam Barre syndrome. There are…"
Colette Ann Frysz commented on Kamal D Shah's blog post New drug patented that targets Factor H mutations"Kamal,
Yes I ran across the drug you mentioned for the Factor H. I believe there is a company in France that is working on the factor h replacement drug. They from what I read are in the beginnings of the prcess. But it is also very promising. I ran…"
Colette Ann Frysz commented on Linda Burke's blog post ADVOCACY MEETING at Alexion Pharmaceuticals to Discuss aHUS and Soliris (Aug. 5, 2010)"Linda,
Kudos to you and the Biermans for being able to bring forth information to the resource of something that could help so many. Kudos to Alexion for even asking."
Colette Ann Frysz left a comment for Stacey"Stacey,
Atypical HUS can attack any major organ in the body and the nervous system. Even though the kidneys are gone the disease can recurr and attack something else. We knew of a young lady that did not have atypical HUS but had typical HUS two…"
Colette Ann Frysz commented on Kerri Grey's blog post Meds for high potassium"Yes, my daughter has used kaxalate for years. We use the powder form because it doesn't taste or smell bad. My daughter and I mix it with just enough water to get it down orally. The dose is based on weight."
Profile Information
- Birthday
- November 8
- 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?
- Yes
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) Protein(Gene)
Colette Ann Frysz's Photos
Colette Ann Frysz's Blog
update
Today is my birthday. Not often do I share that information. But today has got me reviewing. So I've had occasion to review the last twenty years to myself and now to you. We've come a long way and somehow we've also gone backward. In twenty years we've had a significant break through in treating aHUS. There is now hope for my daughter to get a kidney and keep it. She's waited 20+years for that to happen. In the last 20 years I've seen our society take steps backward in how we view…
ContinuePosted on November 8, 2011 at 1:02pm — 2 Comments
Just a note
It's been a long time since I've updated. I'm in the midst of having my daughter with HUS begin her life by herself as a funcitoning productive adult. I house many many thoughts about how this will all work out. I house even more worries. She graduates in May and this in itself is such a big accomplishment. She will have her bachelor's in Vetrinary Technology. Not an easy program but she so loves the course. In trying to be her sounding board for possible jobs and locations we have to… Continue
Posted on February 17, 2011 at 8:53am — 2 Comments
florida trip
Well, the Florida trip that Jessica went on with her classmates went along smoothly. She got to dialysis and back to her hotel without a problem thanks to a cab driver that kind of took her under his wing. Also her treatment went well which was very good news. She had a great time and got to swim with the dolphins. I'm waiting to see pictures of this. She explored Epcot center and got to see behind the scenes at Animal Kingdom. All in all she tried to make good choices food wise and use good… Continue
Posted on May 26, 2010 at 8:30am — 3 Comments
Off to Florida
Well we all got up at about 4:00 am to get Jessica to the airport. She's being a somewhat normal college kid and taking a Florida trip after the year's classes. The only thing she gets to do that her classmates don't is go to a dialysis treatment somewhere else and find a ride there. Fortunately between us we did get these issues ironed out before she left this am. By about 9:30 am she ought to be arriving in Florida. She's looking forward to being able to swim with the dolphins and see behind… Continue
Posted on May 13, 2010 at 8:31am — 1 Comment
Mother's Day
I'm sitting here writing a card to my sister for Mother's Day. It's occurred to me that there are mothers here that could use a little acknowledgement.
To all the mothers on this site I wish you all a Happy Mother's Day!!!!
I wish you all to continue to know all the joys your children bring to you
I wish continued strength as you stand by your children
I wish the love of life of yourselves and your family
I wish you to know the greatness in…
ContinuePosted on May 5, 2010 at 8:41am — 2 Comments
Comment Wall (8 comments)
- At 8:03am on May 10, 2010,
Elizabeth Farrell said… - Hi Colette
Thanks for your comments. I can always tell when Amy is unwell from her eyes,even when she was a baby. Now I have the advantage that she can identify her "strange" tiredness and I can keep a close eye on her.We had blip last year when she had a virus and looked poorly.We rushed her for blood tests but altho' her creatinine level was elevated all her other tests were fine and she came thru ok. Appreciate the advice tho'. Thanks. Liz
- At 9:26am on March 3, 2010,
Heather Still said… - Awesome info Colette - thank you so much. I've learned online a bit about a FAC and I think that's the direction we will be heading. So if you could send me any useful information or brochures your FAC has created I would appreciate it!! You could email as attachments or mail to me PO Box 77 Madison NY 13402 or stonestill@frontiernet.net. I would love to use these to generate some ideas for the committee we may be forming. THANK YOU!!!!!!!!
- At 9:42pm on December 2, 2009,
Deborah Deffenbaugh said… - Hi Colette-Where in Buffalo are you located? We drive there pretty regularly as I went to UB Law and lived there for several years before moving back to Rochester. We usually go to Anderson's for roast beef sandwiches or Ted's for hotdogs. You have better fast food than Rochester. To answer your questions--my husband has been doing well and having less symptoms now that he receives IVIG every 6 weeks. Alyssa's situation is much harder to deal with as I never feel as though I know enough about what we should be doing. I read about this solaris drug but have not had it recommended for Alyssa. Do they only use it if the disease is active?
- At 10:31pm on November 21, 2009, Deborah Deffenbaugh said…
- Hi Colette--We are from Rochester New York and my daughter Alyssa was diagnosed (tenatively as there is no definite genetic abnormality) with aHUS after becoming sick last January. She met a friend Jill from Arkansas who introduced her to this site. I found your information very interesting since we are virtual neighbors and also because my husband was diagnosed with Guillan Barre about 2 years ago and my daughter had a hemotoma(?) develop on her head when a very young infant. I read one of your blogs mentioning both. Ultimately my husband's disease was labelled CIDP (chronic inflammatory demylinating polyneuropathy) instead of Guillan Barre as he continued to be symptomatic. It presented like Guillan Barre. I had never heard of it as a genetic issue though --I thought it was auto-immune. Interesting similarities though with your situation. We get so frustrated as so little is known about both diseases. Alyssa has no kidney function and is on PD daily. We are trying to go to Iowa for more complete testing as we are trying to get her a transplant but are concerned about HUS coming back. Can you tell me anything else you learned about Guillan Barre? Does anyone think it could be related to aHUS?
- At 12:00pm on August 16, 2009,
Grace said…
- Thanks for the welcome, Colette! Your daughter is an inspiration too.
- At 10:17pm on June 20, 2009, Heather Still said…
- I see. I was just curious since we also live in New York State. Just looking for input for when the day comes where Ryan needs a transplant. His hospital has a transplant center - also where my sister with aHUS had her transplant. But I like to weigh all my options so I'm ready for what the future brings. Thanks.
- At 9:05pm on June 17, 2009,
Linda Burke said… - Hi Colette, in reading the Growth Hormone Forum, I was wondering if Jessica ever had any issues with growth/bone development? As I read, it seemed that kids on dialysis potentially have an issue with growth, so I thought that you might have some information to share. With thanks, Linda
- At 10:14am on June 15, 2009, Linda Burke said…
- Hi Colette,
Hoping to see a photo of you and Jessica together on your member profile. Did you know that Jessica can send aHUS virtual bracelets to her friends and family to raise awareness? We hope to see join the website soon - her triumphs in living with aHUS will be an inspiration to those on the site dealing with dialysis. Please consider beginning a dialysis forum for our members...
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.
************************
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...
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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