The Atypical HUS Foundation

October 2013 Blog Posts (9)

Houston Meetup: Learning, Sharing, Caring

Global Genes and The Foundation for Children with atypical HUS joined together in Houston for a program of information and insight on October 25-26th in support of aHUS patients and their families.  A welcome reception and dinner on Friday night allowed opportunities to meet others affected by atypical HUS, and we were all inspired by keynote speaker Linda Loftus.  As parent of a son with aHUS, Linda’s passion about family advocacy issues touched a…

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Added by Linda Burke on October 28, 2013 at 3:30pm — 1 Comment

Bedwetting- cell cept? Prednisone?

So just looking to see if anyone has experienced this or if I should not be worrying at all. Ethan is 9 and is currently having problems wetting the bed at night. When he first got on prednisone we had this happen for about 3 weeks - I'm guessing until his body adjusted. For the last few months it has been a problem again. I monitor his nightly fluid intake and he takes his prednisone in the morning. His dosages has been steadily decreasing and I'm not sure if this could be related. His drs are… Continue

Added by Anne Bruns on October 25, 2013 at 1:09am — 1 Comment

NKF new iPhone app for kidney transplant recipients

Kidney transplant recipients  - check out the new, free app available on the iPhone. NKF has made it easy to have all the information you need to know right at your fingertips. And it's very user friendly, too.

 

 

Added by Dana M Simone on October 24, 2013 at 12:45pm — 1 Comment

aHUS Questions? Ask Dr. Greenbaum via Meetups Email

     Do you have specific questions for aHUS 'physician expert' Dr. Larry Greenbaum but are unable to attend the Oct. 25-26th Meetup in Houston?  There's an exciting new opportunity for your voice to be heard...send your questions to Carrieo@rareproject.org for inclusion in Dr. Greenbaum's Question and Answer segment.  Rare disease advocacy group Global Genes | R.A.R.E. Project will host the Houtson meeting and videotape Dr. Greenbaum's…

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Added by Linda Burke on October 15, 2013 at 10:30am — 2 Comments

Hand out for Family and Friends when they ask, "What can we do?"

    After just reading a blog on Lotsa Helping Hands regarding this topic, I realised this is something we haven't addressed directly.  I would like to get together a hand out for people to use, because, let's face it, when your world is turned upside down by illness, this question comes when you are least able to know or articulate how family and friends can help.  If you have things here I haven't mentioned, please let me know so it…

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Added by Cheryl Biermann on October 10, 2013 at 9:29am — 8 Comments

Join us in Houston on Oct. 25-26th, a Global Genes Meetup

     It's so exciting to have Global Genes host an outstanding program of aHUS education, networking and support on October 25th and 26th.....and I'll be there!

 

     A huge draw for me was the opportunity to hear Dr. Larry Greenbaum speak about aHUS diagnosis, treatment, and issues regarding this complex rare disease.  Some of you may recall that Dr. Greenbaum has been the Talbot's physician…

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Added by Linda Burke on October 5, 2013 at 12:30am — No Comments

Regional Meetings

Hello everyone, as you can see from our events page, we have a few regional meetings coming up. The nearest ones are Houston and Chicago.  If you've been fortunate enough to have attended one of these meetings or the meetings in Iowa, you know what an enormous benefit you receive from attending.  It is really a pretty rare event to meet with experts of Ultra Rare diseases, I encourage you to try and attend or send a family representative to attend one of these meetings.  You'll be able to…

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Added by Cheryl Biermann on October 2, 2013 at 2:24pm — 1 Comment

Insurance Company

My hemoglobin has been going up and down since I've had aHUS. Whenever my hemoglobin was below a 10, I would receive an  Aranesp shot. However, I got a letter recently from my insurance company stating that the Aranesp is not medically necessary for me to have because two weeks ago my hemoglobin was a 11.6. Today it went down to a 10.7. Not low enough to get the shot, but back going downward. I was told my doctors would have to contest that decision and give them a reason why I still require…

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Added by Lisa Stockdale on October 2, 2013 at 2:17pm — 1 Comment

Mom developed a body rash

Hi, this is my first blog and hope that I am doing it right and can some responses. My mom, who is 72 yrs old was diagnosed with AHUS just over a month ago. She has been getting the Solaris treatment, but for some unknown reason has developed a body rash. The Dr. are not sure what it is from, but believe it may be from the steroids, which they stopped. Was just wondering if anyone else has developed such a rash and if so what was it from and what was used to cure it. She is on medication for… Continue

Added by Kenneth wei on October 1, 2013 at 4:30pm — 4 Comments

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