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Old Mon Apr 17, 2017, 09:32 AM
Shazza Shazza is offline
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Join Date: Jul 2013
Location: United Kingdom
Posts: 22
Hi Shelleybean,

We certainly tread a similar path. I saw Professor Marsh on Wednesday 5th April so missed you by a week!

I was told my telemore lengths were normal about a year ago but they took extra blood last week to retest them - didn't realise telomeres changed!

I honestly think the 100,000 Genomes Project is our best hope of a diagnosis. I'm expecting they'll identify my possible faulty gene when compared to my healthy son & my sister's. I'm told the process could take months, possibly years as they're working to identify genes.

Mine & my families blood was taken in January & I was naively hopeful they'd have some news for me whilst I was at Kings last week but no 😐

I'm sure you'll recognise it's a pain having a condition that makes you feel pretty rubbish at times & there's no explanation. It's usually easier to say "I'm fine" when people ask how I am because they'll probably lose interest if I attempt to explain!

Apart from this amazing support group & because I'm not sure quite where I fit in yet, I am a member of 'UK Neutropenia Support', 'MDS UK Community' & 'Aplastic Anaemia Trust - Support Group'. These are all 'closed' Facebook communities who I feel I can identify with! I had to explain to them why I wanted to join which makes it more likely to be private/safe. They are all very informative so you may be interested.
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Neutrophils fluctuating between 0.8 & 1.7 since 2000.
Hypoplastic bone marrow (10-15% cellularity).
No cytogenetic abnormalities.
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