Dear Joan Ann,

Interestingly, although by all measures at the time your sister was 
an exact match, there must have been a mismatch on at least one of 
the alleles (an allele is that part of your chromosome making up a 
specific HLA protein).  As Jennifer and others have explained, GVHD 
is a condition in which the donor (graft) cells recognize the 
recipient/patient's (host) cells as foreign and attack it.  The 
poorer the match, the greater the chance of GVHD.  The experts have 
not identified all the alleles involved in matching donors and 
recipients.  Thus, even 10/10 or 12/12 matches can manifest GVHD, 
although the chances of this occurring are less than, say, a 9/10 
match.  

My husband, Rob, has also had GVHD of the gut (he had a 10/10 
match).  It sure can be uncomfortable.  His GVHD of the gut was 
moderate to severe.  He has not had any rash, though.  Your story 
gives me hope that every day will be better.  As you say, I hope you 
and my husband are around at 80 to contemplate "natural causes."

Warmly,
Kelly

--- In [EMAIL PROTECTED], [EMAIL PROTECTED] wrote:
> Hi Tanya,
> 
> I would add the following info to Erin's post on GVHD...From my 
experience, 
> the severity of the GVHD shows in what my doctor called a "rash."  
That is the 
> first visual sign they look for.  I had it from the tip of my toes 
to the top 
> of my head.
> 
> The rash is the first indication that the transplant is on it's 
way to doing 
> it's job.  It is graded on a scale from 1 to 4, 4 being the 
worse.  You 
> definitely want the rash, but not a 4 scale.  It was the worse for 
me.
> 
> My sister was an exact match and I thought that was good.  From 
what I have 
> gathered, however, that is what gave me all my GVHD problems.  Her 
match was so 
> good it raised havoc fighting my own body, somewhat like siblings 
would do.
> 
> I had chronic sores in my mouth, which after 3 yrs have finally 
left me 
> alone.  The next chronic I dealt with was intestinal.  It kept me 
thin and looking 
> great, but feeling like crap. 
> 
> I believe the closer the HLA match the more possibilities of 
irritating 
> problems which you learn to deal with and eventually 
overcome....but I'm  not a 
> doctor.  This is an observation from experiencing, speaking and 
reading with 
> others.
> 
> That is all past now and my immune system seems to be working well 
after 4 
> years.
> 
> Do I have the "cure?"  When I ask my doctor if I'm cured, he 
always says 
> "You'll know that you're cured when you die from natural causes in 
perhaps your 
> 80's."
> 
> Joan Ann
> 
> 
> dx CML 5/3/00
> SCT 12/21/00
> PCR Neg. 1/02
> Still in Remission 2004



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