How long did it take to HLA Type Siblings?

[ixmnrs]

Hello everyone,

A little background...

My son was diagnosed with aplastic anemia after a severe nosebleed while he was fighting a viral infection. Since then, his pancytopenia has been persistent, WBC around 2, Platelets around 50, ANC between 500 and 1000 with Hg around 110-120 (Canadian numbers). Cellularity on BMB was around 20%. His counts have been pretty stable since; no transfusions, no treatments and only one more severe nosebleed a month after. His diagnosis is moderate Aplastic Anemia. A whole battery of blood tests and genetic tests (showed slightly short telomeres) have been negative, so no 'cause' yet but some results still pending.

Nonetheless they only arranged for HLA Typing (1 sister and us) 1.5 months later (Wasn't considered urgent as no treatment was required so I imagine it was somewhat pushed back) and it has been 4+ weeks now without an result. Is that somewhat par for the course when it comes to this type of HLA Typing? What were some of your experiences? The wait is just killing us, even though we are thankful things have been stable without treatment, especially reading the stories that most of you have endured. Thank you for sharing your experiences and knowledge!

[SLB]

I am wondering the same thing. I am in Australia and my siblings' HLA blood tests were taken 2 months ago and we still haven't heard anything. However they did tell us we will only hear from them if there was a potential match.... when do we stop waiting? Hope you hear some good news soon

[ixmnrs]

Wow, 2 months! Yes, they said they would contact us directly if there was a match but only contact our doctor if there wasn't but neither of us have heard yet so we just keep waiting. I hope your results come soon.

[edithr]

I want to say it took about a week to find out that my daughter did not match my son. We all hate the waiting game. Especially when you're positive they know the answer and just haven't told you.

How long did it take to test his telomeres, and where did you get them tested at? That test took about a month I think, we went through repeat diagnostics in Canada.

I'm glad to hear your son is doing well, how old is he?

[ixmnrs]

I assume that's where we had to send our tests to as well as they did say British Columbia and I think they're the only lab that does it. Telemore testing took a while (at least a month) and I'm not still sure they have all the results of the testing. Probably they sent for the basic procedure first, and then decided they needed a more detailed testing later. Nonetheless, we just know that they are a little short, but not DKC short if that makes sense. He's had a whole battery of tests to rule out a lot of congenital conditions which so far has been negative.

My son is 14. So far, he has been stable and to look at him, it's hard to believe that AA is even a possibility, but we're thankful. The scary part is the waiting, the uncertainty and the fact that our doctor has essentially said that in his experience, 2/3 of patients progress to SAA.

Thanks for your reply and I hope Eric is doing well.

[Hopeful]

Hi,

When I had my HLA typing done, it took *months* to get the results back. My siblings were matches.

[squirrellypoo]

Mine only took a couple of weeks, if I remember correctly, and that involved a bunch of international paperwork, because my brother was HLA matched in the States, who then sent the results over to the Anthony Nolan Trust in the UK for analysis/comparison against mine.

But we were all fairly certain he wasn't a match, as my parents thought they'd tried that in 1984...

[dfantle]

I have 4 siblings and we received the results within 1 week. This is in the US though. I'm wondering if the result is taking longer because it was marked as not urgent.

My telomere results also took 1 week (they're normal)

Best wishes,

[ixmnrs]

Hi Dfantle

At this time, I'm not sure why it's taking too long, I don' knw if they marked it as not urgent. I'm hanging on to the hope that maybe my daughter was a possible match so they have to do a high resolution study to confirm? But, we're still in the dark right now. Thanks for your response and I hope you are doing well.

[ixmnrs]

Thank you for all your replies. We did find out the results today. His sister was not a match but I was and they are still waiting on some high resolution testing on the DQ gene.