"Hi Lannette, for check up i think it is better talk to ur doctor, our doctor wanted to see us every 6mo, but with all Annas problems she end up see us every month, Labs was done monthly, but if Anna was sick we had to do labs on that day to make…"
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Lannette Yorgason
- 38, Female
- Chelan, WA
- United States
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Lannette Yorgason's Discussions
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1 Reply
How frequently should I be seeing my hematologist/oncologist? Should I be having blood tests done regularly? I don't have a doctor/specialist who knows anything about my disease. I feel lost and…Continue
Started this discussion. Last reply by Svetlana Finley May 5.
Not diagnosed
8 Replies
I have been told, by my doctors, that the closest diagnosis they have for what my illness most resembled was aHUS. How can they not know if this is my diagnosis? Did anyone else receive an answer…Continue
Started this discussion. Last reply by Danna Vaughn Sep 23, 2011.
Lannette Yorgason's Page
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Lannette Yorgason posted a discussionCheck ups
How frequently should I be seeing my hematologist/oncologist? Should I be having blood tests done regularly? I don't have a doctor/specialist who knows anything about my disease. I feel lost and worried. Are there things I should be doing? Help! Thanks!
Danna Vaughn replied to Lannette Yorgason's discussion Not diagnosed"Ma'am,
It took several doctors close to two weeks to diagnose my niece with aHUS. There were just too many issues and symptoms that did not "match up". They initially diagnosed her with ulcerative colitis and/or Krohn's disease.…"
Linda Burke replied to Lannette Yorgason's discussion Not diagnosed"Hi Lannette,
We offer the "Doc to Doc Directory" on our Home Page specifically for this type of thing. It's a free service by our wonderful volunteer physicians, who are experienced in multiple…"
Lannette Yorgason replied to Lannette Yorgason's discussion Not diagnosed"Grace, thank you so much for the information! Too valuable!!! I will call you soon. I look forward to your knowledge and appreciate your willingness to share it. Cheryl, I will do just that! Thanks for the idea!"
Cheryl Biermann replied to Lannette Yorgason's discussion Not diagnosed"Ah, Grace as always you get to the heart of the matter, thanks for such a clear explanation. Lannette, maybe someone could print a copy of the boot camp for youl, it might come in handy, since your computer is down."
"Hi Lannette,
Welcome! I first got sick at the age of 19 (I'm 30 now), and it's always been HUS/TTP. The fact that your doctors know your illness wasn't caused by E coli or a deficiency in ADAMTS13 is a big step forward in my…"
Cheryl Biermann replied to Lannette Yorgason's discussion Not diagnosed"Hi, I'm concerned about your lethargy, it is sometimes the first sign activity is gearing up again; so please if you get any worse, do not hesitate in getting to the hospital. The boot camp is great because it will teach you what your lab…"
Lannette Yorgason replied to Lannette Yorgason's discussion Not diagnosed"Thanks, Cheryl. My doc is working to get genetic testing approved with my insurance. I was admitted to the hospital in January 2009. All they could tell me for sure was that it was not TTP b/c of the lack of the Adams T-S 13 and not HUS because of…"
Cheryl Biermann replied to Lannette Yorgason's discussion Not diagnosed"Hy Lannette,
Please loot at the aHUS Boot Camp for labs and also invite your doctors to get your genetic testing done. There is a doc to doc registry on the home page, and any of these docs would be happy to talk to yours and give them…"
Lannette Yorgason replied to Bill Biermann's discussion conference"I fear a month from now, I will not find his link again to request them. I'm new to the site and am trying desperately to understand my disease. Any suggestions would be appreciated! Thanks! "
Lannette Yorgason posted a discussionNot diagnosed
I have been told, by my doctors, that the closest diagnosis they have for what my illness most resembled was aHUS. How can they not know if this is my diagnosis? Did anyone else receive an answer like that or how was your diagnosis confirmed?'
Lannette Yorgason left a comment for Linda Burke"Thank you, Linda! I appreciate your help! Lannette"
Linda Burke left a comment for Lannette Yorgason"Welcome, we hope you find information and support on this site."
Profile Information
- Birthday
- December 17
- 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 membership request involves business interests as I seek additional aHUS information for business applications.
- Yes
- My child ( or myself as a patient) is best described as:
- Not Tested, Interested in Undergoing Genetic Testing
Comment Wall (1 comment)
- At 12:55am on September 10, 2011, Linda Burke said…
- Welcome, we hope you find information and support on this site.
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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