I have been diagnosed with chronic neutrophilic leukaemia (CNL) but this is a very rare one. Is there anyone on here with it?
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Hi @Leggit
I’m so sorry to hear of your diagnosis & that you find yourself here.
I would like to welcome you though & let you know you will always find support here @BloodCancerUK it may also be really helpful for you to call our support line 0808 2080 888. Please take care & we are here for you 
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Hi @Leggit and welcome to the forum. I’m sorry I can’t help as I have a different blood cancer. However, I can see @JoJoflowergirl has given you the support line details which may be worth a call.
A diagnosis can be a huge shock - how are you?
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Hello and thank you. I’m ok was diagnosed a few years back now but only just found this forum. I am also a member of health unlocked but again no one seems to have my condition. I’m under a professor in Guys hospital as she appears to be the only person dealing with this very rare illness. I usually visit her twice a year but haven’t met up since before the pandemic I do also see a local haematologist every couple of months but as it is so rare they don’t have the experience of the professor. Would just be nice to chat with someone with the same.
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Oh @Leggit a great big welcome.
Yes, it must feel very lonely and isolated as you have not found anyone with your diagnosis. I remember when I was first diagnosed I thought that I was the only person in the world with my condition and how that felt.
I do help someone will be able to help you.
It sounds as if you are really being looked after well medically, but as you say like many of us you have not seen your professor since before the pandemic.
If you do have any medical concerns do chase to get a face to face appointment with your professor.
I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses just in case they can help at all.
Please don’t be put off using our forum, you are part of it now, as what I have found is that we may have different blood cancers, but we often seem to share the similar fears, thoughts, feelings and practicalities.
Look after yourself and I look forward to hearing more about you.
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Thank you Erica I do have an appointment in March to have a face to face with the professor so thanks for your concern.
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Hello and welcome @Leggit
Thank you for joining the Forum and I do hope you will find this a supportive space.
As you mentioned, CNL is rare and I am sure it would be really useful to find others with this disease. May I aks whether you have spoken to anyone from Leukaemia Care about this as they do have information about Chronic Neutrophilic Leukaemia? They do have support groups running but I would say due to the rarity of this disease it is likely that groups include other Leukaemias too.
May I ask whether you have any symptoms that concern you?
As our brilliant forum members have said we are very happy to talk to you on the support services phone line at any time so please don’t hesistate to get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Hello Emma thank you for your kind response I will contact on my return from holiday.
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