The Atypical HUS Foundation

After many years of waiting and many tests done in Canada, France, Germany and Italy...

They have discovered in France that Olivia has a new type of MCP mutation.

All other factors are normal and explains why she never required any plasma treatment and spontaneously would snap out of the relapse herself.

Also explains why she never had high blood pressure, no kidney damage and never required dialysis.

This is known to be the mildest form of AHUS.

We have Dr. appt on the 30th to review in detail.

Will keep you up to date.

 

 

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Comment by Cheryl Biermann on October 27, 2011 at 11:49am
We have labs done in Iowa now, which is to my knowledge running the most comprehensive gene tests.  Could you please let us know exactly what the MCP is mutation is?  We have MCP mutation in our family that is thought to be harmless.
Comment by Theresa Pereira on August 25, 2011 at 11:49am

Do you have access to labs in Europe for Nathan?

France is the most advanced......

Comment by Cheryl Biermann on August 25, 2011 at 9:28am

Thanks Theresa,

 

Nathan's first test were also inconclusive, I'm glad they continued to work on it for you sending it out to other labs.  It is good for the doctors to know this is MCP. 

Comment by Theresa Pereira on August 25, 2011 at 9:05am

Good morning

This was Olivia's second test for MCP.

The first in Italy a few years ago came out negative.

Judging by the last (4th) relapse, France was not convinced it was not MCP and retested.

I will be sure to post more once I have my meeting.

Comment by Linda Burke on August 24, 2011 at 10:15pm

Finally, it looks like some light is being shed on this for your family and I hope that some answers will be coming your way on the 30th....best wishes!!  I'd like to request that you also post both on our Home Page (providing this info to those who access aHUS news via our Face Book page) and this site's MCP Forum online here at http://www.atypicalhus.org/forum/topics/mcp-mutations?commentId=330... (to help families find MCP info easily).  Thanks for helping to keep us informed, as many other families have MCP mutations - perhaps it will give them a jump start to look for new answers.

Comment by Cheryl Biermann on August 24, 2011 at 5:52pm
Wow, I am really interested in her mutation, please do find out, some of my kids and hubby have mutation that is seemingly benign in MCP.

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