"Hey, thought I would say hi and see how you all are doing, we reached the two year mark of our diagnosis. I still think of your family and pray that all is well. - Terry Huber and family"
Terry Huber's Page
Latest Activity
Terry Huber left a comment for Linda Burke"Thanks for asking, Jacob is doing pretty good, day by day. We were approved for the Eculizumab (Soliris) back in November but because he was receiving plasma pheresis we now have to wait until he relapses again. We have had a couple of scares but he…"
Linda Burke left a comment for Terry Huber"Hi Terry, how is Jacob doing? Hope all has been quiet at your end, would love to hear an update of good news and have you add your family's story to your profile/Member Page. Best wishes, Linda"
Terry Huber commented on Linda Burke's blog post Enrollment has Begun for the Pediatric Clinical Trial of Soliris"Jacob just got approved for the trial. He had another aHUS attack and just spent the last week at Children's in Denver. They are in the process of approving Children's to be the place for Jacob's trial. It is a 26 week trial, we are…"
Cheryl Biermann left a comment for Terry Huber"Hi Terry,
I'll look for it again - Bill was leery of me giving out the test, because it is a rare side effect of the head and neck that is disfiguring and permanent. That is why I asked if they are sure it is hives; this is a scary diagnosis.…"
Sharon Madrid commented on Terry Huber's blog post Hives"Marissa broke out in hives once really bad just a few minutes after her plasma pheresis had finished. Another time she started to break out but thankfully it ended with only one hive and oddly enough they hadn't even started running the plasma…"
Terry Huber commented on Terry Huber's blog post Hives"I believe they are hives, the doctors have seen them, they are red, swollen and he gets them all over his body. Sometimes he is just really swollen in the face (eyes, mouth neck). Jacob says they hurt and itch ALOT! I would be curious to hear about…"
Cheryl Biermann commented on Terry Huber's blog post Hives"Are you absolutely sure it is hives? Next time, make sure the medical professionals SEE him when he has hives, take him in. When Nathan had his episode, it didn't look like hives, just swelling-that is why they tested his blood...I do have…"
Terry Huber commented on Terry Huber's blog post Hives"Jacob had the hives really bad and he went in last friday for FFP and epogen and within three hours the hives were gone and he just had the bruising left and by Sunday, he was clear. I think there is something else that is causing the hives, not the…"
Svetlana Finley commented on Terry Huber's blog post Hives"Anna still gets hives now then, her last treatment was in April 2010. We will have dr. app next week i will be asking q about hives. I will let u know what they say."
Cheryl Biermann commented on Terry Huber's blog post Hives"Hi Terry,
Nathan had periodic hives due to his FFP transfusions. We gave him Benadryll before transfusions and it helped.
After he was on dialysis, he also had severe hives and swelling of his face and neck, although his problem was not due to the…"
Terry Huber commented on Terry Huber's blog post Hives"Thanks, it seems he gets the hives inbetween the FFP treatments. Once he gets the FFP the hives are gone within a day. Another mystery with this illness."
"I honestly don't know anything about hives and aHUS. However, like Swetinana has said, it could be a reaction to the FFP. Having aHUS myself, I have experienced dry skin, mainly because of the the dialysis treatments I receive. But, hives…"
Svetlana Finley commented on Terry Huber's blog post Hives"Anna used to get hives from FFP, they had to put her on hydroxyzine (attarax) allergy meds for hives. every time we saw one she had to take the pill, we never waited for the second to pop, she was miserble when she got them first time they had. Then…"
Profile Information
- Birthday
- February 25
- 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)
Terry Huber's Blog
Hives
Has anyone had or heard of hives being related to this disease? Jacob seems to break out every ten days and is misserable! It seems like we can't go the three weeks that the doctors want us to for the FFP and epogen.
Posted on September 22, 2010 at 6:30pm — 9 Comments
Comment Wall (7 comments)
- At 8:57am on March 28, 2011, Linda Burke said…
- Hi Terry, how is Jacob doing? Hope all has been quiet at your end, would love to hear an update of good news and have you add your family's story to your profile/Member Page. Best wishes, Linda
- At 12:13pm on October 8, 2010, Cheryl Biermann said…
- Hi Terry,
I'll look for it again - Bill was leery of me giving out the test, because it is a rare side effect of the head and neck that is disfiguring and permanent. That is why I asked if they are sure it is hives; this is a scary diagnosis. The only reason we were tested for it was that the swelling was in his face and neck only. I'll be back Monday, I don't have the info with me today.
- At 10:02am on August 4, 2010, Svetlana Finley said…
- Welcome here!!!
- At 10:06pm on August 3, 2010, Linda Burke said…
- Check out the Parent's Perspective tab at the top of this page for a nice Mom(s)-written article. sort of an aHUS 'bootcamp' of basic info. When you feel so inclined, we'd love to see a photo of Jacob and hear your family's story.
- At 12:24pm on August 3, 2010,
lisa ann peterson said… - welcome to the site....
- At 11:59am on August 3, 2010, Cheryl Biermann said…
- Welcome to our site, please feel free to join in the discussions/forums. We are here to support you as best we can.
- At 11:38pm on August 2, 2010, Linda Burke said…
- Hi Terry,
Thank you for becoming a member of our aHUS online community. Do you have a friend or relative affected by atypical HUS?
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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