The Atypical HUS Foundation

Len Woodward's Comments

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At 7:29am on April 3, 2016, Didi Kirsten Tatlow said…
Hi Len, I remember you v well and hello again! I just completed and submitted the questionnaire. I do live in China but am perhaps not typical in the sense that when I had a flare in Dec. 2014 I was lucky enough to be able to get to Hong Kong for very good (private) treatment. Eculizumab is not available in China last I checked and only privately in Hong Kong so one needs a good private health plan. My sense is that in China there is little awareness of the disease, though they know and can treat TTP. Excitingly, there is a rare disease Organization here but they didn't really know aHUS either. I was last in touch with them in about June 2015 so can update with them if there's interest. Kind regards! I'm so glad there's a survey! What's it for? For whom?
At 11:59pm on December 26, 2014, Linda Burke said…

I trust that you had a lovely Boxing Day, and wanted to let you know that I toasted the Woodward clan while I popped my Christmas cracker on December 25th.  And yes, I did wear my crown whilst serving holiday dinner to several extended family members!  Hope you're enjoying a wonderful holiday season....best wishes for a fabulous year to come!

At 10:27am on August 27, 2014, Kathy Jo Matlock said…
Len, it looks as though the Price's descended from Montgomeryshire, Wales. Montgomeryshire today constitutes the northern part of the principal area of Powys. Interesting. I'll look into the connection. Thanks!
At 10:13am on August 27, 2014, Kathy Jo Matlock said…
My maiden name is Price. The Price's are originally from Wales. I'm going to go check on that right now. We also have something called Lynch Syndrome. Both of my sisters have it as do 2 of their daughters. Their other children haven't been tested. We have a host of other autoimmune conditions in our family. My husband's sister has Wegener's. She was diagnosed in her early 30's. After being very, very ill , hospitalized in critical care numerous times, my husband donated a kidney to her. She rejected it fairly quickly but was "managed" and completely rejected after 18 months. In 2000 I donated a kidney & she's still healthy today! Many times I wonder if all of these things have a commonality...beyond being human! :) Thanks for replying! I'll be praying for you!
At 9:59pm on December 21, 2013, Cheryl Biermann said…

Hi Len, I just saw your daughter has been in the hospital.  I hope everything is back to normal and you can enjoy the beautiful Christmas season.  God bless you and your family.

At 9:23pm on December 20, 2013, Linda Burke said…

Hi Len,

Just checking in to see how your daughter is doing....hope that she's been released from the hospital, with one of the best Christmas presents EVER!

At 6:24pm on January 29, 2013, natalie furey said…

hi len im new to the site my daughter cheyanne was only disgnosed three weeks ago with ahus she was really poorly and we nearly lost her ,thankfully at royal manchester childrens hospital they got her eculizumab at ten oclock at nite two hours after admission and over the last three weeks its turned things right around,just wondering when is there next meeting ide love to come n contribute and comment on this miracle drug

At 5:30pm on November 22, 2012, clare smith said…
Hi Len,
Can't believe you saw the article in the enquirer! Our 15 year old nephew has recently done his work experience with the enquirer and they allowed him to do the article. He didn't do too bad, a few inacuurancies but not a bad job for his first go. I have since had another journalist ask if she can also cover our story.

We really hope to be at the meeting in Solihull but need to sort a sitter out for the children but as soon as I'm able to confirm I'll give Ian Macersie a call.
Would be so good to talk with others that have been through the same .
At 7:20pm on November 8, 2012, jemma kilty said…
Hiya thankyou so much. We will definitely be attending. Would you like me to ask her to contact you x
At 4:07pm on February 23, 2012, John Exton said…

HI Len

Thankyou for your kind welcome.

John

At 8:54pm on October 7, 2011, Cheryl Biermann said…
Hi and welcome!  Hope you find our site informative as well as a great way to keep connected to your UK friends as well as those around the world!
At 6:13pm on October 7, 2011, Linda Burke said…

Hi Len,

Thanks for stepping up to post regarding the aHUS activities in the UK.  You're most welcome to create a UK Forum, helping  your UK patients/families gather in a central location and acting as a 'meeting place' online.  Best, Linda

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