Sponsored Links

Have you ever heard of Neuroblastoma?

Kits

ULTIMATE Member
Well until recently I hadn't but the number of children that have died, ill with this terminal illness or in various stages of treatment to try and save them.

I first met Dylan when my mother was ill he was just toddling around then now this lad is 3 yrs old suffering from Neuroblastoma I grew up with his grandmother.

Background (Preamble):
Neuroblastoma is a very aggressive form of childhood Cancer; after domestic accident, it is the second most frequent cause of mortality in children.

It is the single most common type of Cancer in infants and the 4th most common type of Cancer in children. However, few people have heard of it and most do not know the signs and symptoms.

This means that although symptoms may have been present in the child for some time, in over 75% of children the diagnosis is not made until the disease has reached stage 4, the final stage. Prognosis for this group is grim, offering around 5% chance of survival.

In contrast, children diagnosed in the early stages have up to a 95% chance of survival.

Treating a child who has stage 4 Neuroblastoma costs the NHS an average of £600,000 in the first year alone. Around 75 children per year will be diagnosed at stage 4. Several of those families will opt for treatment abroad, meaning an average of £300,000 of UK fundraised money, per child, will go overseas.

Most children will still not survive – largely because their symptoms were diagnosed too late.
Petition:
We, the undersigned, are petitioning you, our Government, to take reasonable preventative measures - in the form of education and awareness of the signs and symptoms of Neuroblastoma, a childhood cancer – to stop children dying.

High profile awareness campaigns, such as that for cot death and Meningitis, have dramatically slashed mortality rates through alerting the public to danger signs. The same would be true for Neuroblastoma.

We are requesting a Government funded awareness campaign to educate the public to recognise the signs and symptoms of Neuroblastoma, and empower parents and GP's to adopt a policy of early testing when symptoms first present.

In addition to this, we request that strict guidelines be placed on UK organisations who label Neuroblastoma as rare, contradicting major worldwide Neuroblastoma organisations.

The public says it will not stand by and see children die from a simple lack of education and awareness and, in the current economic climate, demands better use of public money in combating this disease earlier.
 

Attachments

  • 100faces.webp
    100faces.webp
    43.3 KB · Views: 112
I didn't know about this until now and will give it my support.
 
Hi Kitty, I have heard of it, but not some much info as you posted. I came across it when they were testing me 7 ways to Sunday, to find out what I have. (just as obscure, and usually only affects women and children)
 
Sponsored Links
Sorry to hear that ...


In addition to this, we request that strict guidelines be placed on UK organisations who label Neuroblastoma as rare, contradicting major worldwide Neuroblastoma organisations.

What's going on here? This quote from Cancer Research UK -


I find it hard to believe Cancer Research UK would deliberately lie about neuroblastoma. :hrmph:
 
Some say it is 1 in 100 what is the chances of two in the news at the same time if it is as rear as they say.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002381/

Main problem is Doctors are missing the signs wrongly diagnosing the condition.

The bottom line Dylan Dey will have no further treatment as it has become untreatable 3 years old.
 
Unfortunately
Neuroblastoma is almost symptom-less. Symptoms that are present are usually dismissed as being something minor. Often, it is not until the tumours are so large that they are pressing or squashing organs, nerves or pathways and causing physical problems such as walking or going to the toilet, that the disease is detected.

Also from what I've seen of the symptoms they appear to be general cancer symptoms rather than something specific. I certainly recognise some of them from mine :( I think a general these are the possible side effects and symptoms campaign is whats missing in the uk. We seem to lean far too heavily on the check for lumps for a/y/z cancer or specific campaign to for different types. Once a GP has spotted it could be cancer they'll then hand over to an oncologist who'll be able to work out what type.

Is there any other way to show my support, as I don't really agree with the wording of the petition?
 
At moment can't think to well since we are now at a stage with Dylan that we are just trying to give him the best while we have him. We now know he is not going to get better he has failed to respond to all treatment given.
 
Sponsored Links
Top
Cheap BIG ISPs for 100Mbps+
Community Fibre UK ISP Logo
150Mbps
Gift: None
Virgin Media UK ISP Logo
Virgin Media £22.99
132Mbps
Gift: None
Vodafone UK ISP Logo
Vodafone £24.00 - 26.00
150Mbps
Gift: None
NOW UK ISP Logo
NOW £24.00
100Mbps
Gift: None
Plusnet UK ISP Logo
Plusnet £25.99
145Mbps
Gift: £50 Reward Card
Large Availability | View All
Cheapest ISPs for 100Mbps+
Gigaclear UK ISP Logo
Gigaclear £17.00
200Mbps
Gift: None
Community Fibre UK ISP Logo
150Mbps
Gift: None
Virgin Media UK ISP Logo
Virgin Media £22.99
132Mbps
Gift: None
Hey! Broadband UK ISP Logo
150Mbps
Gift: None
Youfibre UK ISP Logo
Youfibre £23.99
150Mbps
Gift: None
Large Availability | View All
Sponsored Links
The Top 15 Category Tags
  1. FTTP (6027)
  2. BT (3639)
  3. Politics (2721)
  4. Business (2440)
  5. Openreach (2405)
  6. Building Digital UK (2330)
  7. Mobile Broadband (2146)
  8. FTTC (2083)
  9. Statistics (1901)
  10. 4G (1816)
  11. Virgin Media (1764)
  12. Ofcom Regulation (1582)
  13. Fibre Optic (1467)
  14. Wireless Internet (1462)
  15. 5G (1407)
Sponsored

Copyright © 1999 to Present - ISPreview.co.uk - All Rights Reserved - Terms  ,  Privacy and Cookie Policy  ,  Links  ,  Website Rules