diffuse idiopathic pulmonary neuroendocrine cell hyperplasia. DIPNECH. I was diagnosed with this in Aug 2023 by Royal Brompton.

[Bellaowl]

nobody outside of a small group of doctors at Rbht appear to know about this. It has no treatment.

mic been asthmatic since 10months of age so I’m familiar with lung problems. But this is working in the dark.

[Yumz199725]

Wow that's alot to deal with, I have never heard of this condition hope your ok x

[Nicholatracy]

Unfortunately I have never heard of this condition. I know you are in good hands. Stay strong 🐞🐞

.

[Garrypalmer]

Thanks for this interesting information!

[Alberta56]

Sorry to hear you've got this condition with the unpronounceable name. Thank goodness there's an abbreviation. It must be disconcerting to be told there is no treatment. I hope the medical men put their heads together and come up with a plan to keep it stable, the same as they have for other respiratory diseases. Very best wishes.

[Bellaowl in reply to Alberta56]

Thank you Albert. I think the lack of people diagnosed is an issue; 10 in U.K. and 200 in Europe. It can only be diagnosed by CT of lungs.

But not many people get them. I’m sure if more did it may be easier to find a cause and a treatment, but that costs money and would affect people’s insurance. It’s a precursor to lung cancer .

The key appears to be neuroendocrine cells and what triggers them .

At present I feel perPetually tired .

I need to try to get the care allowance of DLA - it’s the only benefit open to me as I’m 76 and already have lower rate mobility for DLA. But if nobody knows what this is I don’t know how DLA will respond.

I’v been tolD to use the nebuliser x4/day

Thank you all for replies.

BelLaowl

[Daisytime in reply to Bellaowl]

Hi Bell, If you are on DLA you can update them of your condition and hopefully you should be reassessed fairly quickly. Give them a call I am sure it will be fine as you have the evidence to back you. Good luck. Daisy

[Daisytime in reply to Bellaowl]

It may also be worth looking at getting attendance allowance which you can apply for online. They are quick to assess. Good luck

[Bellaowl in reply to Daisytime]

I can’t get Attenbdance Allowance because I already have DLA. That’s what Age U.K. told me.

[MoyB]

I've never heard of this condition until now so had a bit of a Google. There's not much info out there, is there? You seem to have summed up what all the different sites say.

Will your consultant at RBH write a supporting letter for you, do you think, so that you can apply for the DLA? I think you'll need to have someone to confirm that it is a chronic condition (and progressive?) as I don't imagine the people dealing with the DLA application will have heard of it often, if at all.

I hope you are able to get the support you need. I've heard great things about the Brompton so at least you are being seen by the right people.

xx Moy

[Bellaowl in reply to MoyB]

It’s actually quite difficult to get letters from Brompton. I’m having to go through Pals.

In contrast to UCLH where clinic letters and bloods and tests are posted on the mycare site.

I’m in the process of writing another email to Dr. Kokosi to get her reports- sending via Pals who have been v helpful.

Yes, I think u are right nobody attached to DLA is likely to have heard of it. So as many reports are needed as possible.

Thanks.

Bella

[MoyB in reply to Bellaowl]

I hope you get DLA sorted in the end. The hoops we have to jump through ... !

xx Moy

[Ern007]

Hi - Rotten luck to have DIPNECH - I know nothing much about it. Googling the treatments are from Steroids to surgery - I wish you well.

[Alberta56]

The people dishing out DLA are interested in how it affects your daily living, though they will obviously need confirmation that this is a chronic condition. You need help from the Cits' Advice Bureau or some similar body to make sure you fill in all the relevant information in the way that makes sense to the assessors. They have a lot of experience.

[Bellaowl in reply to Alberta56]

I did know that Alberta. But when you have been disabled almost all your life, it’s quite difficult to know how a non disabled person would behave.

I drive an adapted car, I can’t climb stairs unless it’s desperate eg trying to get out at Euston Square when the lift is broken.

I know one of the questions is about preparing food. I just avoid foods I can’t prepare. Etc.

I have a bath board, handles by the vath abd shower. But that’s means I don’t need help bc there is no one to help.

I find it really difficult to explain.

Sorry I’m grumpy and not bern well for about a month.

Bella

[Alberta56]

You're not grumpy. You are having a hard time of it. 'Professional' form fillers will know the questions to ask you to make sure you don't miss out anything relevant. I was talking to a lady from Mencap last week, who was helping my Autistic daughter fill in a health assessment form from the DSS. It was surprising the things which daughter and I missed trying to fill in bits of the form on our own.

[Bellaowl in reply to Alberta56]

That’s what worries me.

I hope your daughter got her benefits.

I’v just been sent the CT results from Radiologist via Pals office; it’s much worse than I envisaged. Nodules extensive now carcinoid lung disease.

I now have email address of Dr Kokosi so will write to her direct.

I assume they will want to biopsy 2 bigger nodules.

Why it suddenly happened I don’t know, I’v never smoked but I did work in central London until I retired 25yrs ago.

Bella

[MoyB in reply to Bellaowl]

That's really rotten - as if you don't already have enough going on! I hope they are able to reassure you after the biopsies. xx Moy

[Alberta56]

So sorry to hear this. I hope the biopsies will prove that there is not too much wrong.