Another newby

[Brendaf]

Hi I’m reading about CLL but mine is CNL does anyone else have this diagnosis? Apparently I’m only one of five in the country with this very rare blood disorder.

[stillkicking]

Hi Brendaf,

Welcome to the forum. I had not heard of CNL before, so have consulted "Dr Google" and had a read about it. I see what you mean by "rare"... it certainly is! I see that it also is part of the MPN family and that, in the case of CNL it is the neutrophils that are proliferating.

It must be a very lonely thing having a condition as rare as yours and I do hope that, ideally, you do find others with the same condition who can offer help and guidance. Whilst most of us here have other MPNs and are probably busy making too many platelets or red blood cells rather than neutrophils, I know that we do battle with loneliness, fear, fatigue, feeling unwell, "experts" in white coats who don't understand us, experts we find hard to understand, and so on, and I am sure you will find a great deal of support and a warm welcome here.

Kind Thoughts to you,

Peter

[Brendaf in reply to stillkicking]

Thank you Peter I have been reading all about MPNs but they didn’t really apply to my condition. I’m under the care of Professor Harrison who is keeping an eye on me and it’s just a matter of wait and see which is not ideal but at least she has the knowledge and expertise. Thanks again. Brenda

[stillkicking in reply to Brendaf]

Hi Brenda,

Pleased to see that you have Prof H keeping an eye on things, but it must be a difficult time for you. I'm guessing that you were only recently diagnosed?

Best wishes, Peter

[Ebot]

Hi Brenda. Well you make the rest of us MPNers look entirely common! I can offer nothing helpful except to say I would take great heart from being under the care Prof H and the team at Guy’s. You are in excellent hands. Always a comfort to have faith in your clinical practitioners. All the best. Keep us posted.

[Brendaf in reply to Ebot]

Hi Ebot thank you for your reply and yes I’m happy to have expertise from Guys hospital. I will keep you all informed if I find any further information. Brenda

[Wyebird]

Wow you are a rareity, I’ve had to google this. I do hope you get the support you need both medically and emotionally. Welcome to this forum - my life line.

[Brendaf in reply to Wyebird]

Hi Wyebitd thank you for your reply I’m hoping to find someone else with this rare condition but it’s nice to have people with similar conditions who understands what it’s like. Brenda