COPD & Emphysema Support Group

I am male and 65 years old and I am on oxygen 24 / 7 and was first diagnosed with COPD some two years ago and I had a pretty serious exacerbation in October ‘06 and spent some time in hospital. In truth neither the medical staff nor my family expected me to pull through at the time – but here I am and following to the letter all my exercising regime and strictly adhering to my medication regimen.

The major problem I have is that as a sufferer my family do NOT seem to appreciate exactly what the COPD sufferers has to endure. If you know of anyone out there who could direct me to a web page or whatever that would or could serve as an educational awareness programme or syllabus on this subject it would be greatly appreciated.

If you can help in any way in identifying something other than “Sick Lungs Don’t Show” which I have already tried without achieving the desired success, We here in Northern Ireland sadly are light years behind most if not all Support Networks, for after our rehabilitation programme there is zip – nothing – but there in existence in this area a completely ineffective and poorly managed Support Group of which I attended for five months but have decided (along with very many more) that it is not for us as they are going no-where and are completely out of step with the aspirations of Support Groups.

Therefore, I and others are initiating a Properly Constituted Professional Respiratory Support Group open to all regardless of Class, Religion, Creed or Colour. Our membership is made up almost exclusively from the disenchanted members of the Group referred to above and to which we were all affiliated. – Our declared aims and objectives for our new Support Group are quote: –

1. To encourage and devote resources to COPD awareness and prevention.

2. Meet with our local political leaders in our district to request their help in bringing attention to this leading, and growing cause of mortality.

3. Conduct Continuing Medical Education (CME) and non-CME events, such as community service programmes, under the auspices of our COPD Support Group.

4. Issue COPD communications (including email, print and newsletters) promoting the programmes and the doctor and patient materials it contains.

5. Conduct outreach to primary care – internal medicine and family practice doctors – to increase their capacity to recognise and treat patients with COPD.

6. Write op-ed pieces on COPD in local newspapers, calling for a local and nationwide commitment to reducing the prevalence of this disease and finding effective cures for those whose lives are already affected.

Plus to meet with feature editors of all the local newspapers to encourage them to cover this health problem, provide medical and scientific background information on COPD, and to put the reporters in touch with patients willing to speak about how COPD has affected their lives”.

We are disposed and willing to affiliate ourselves to any reputable Support Network. So if anyone has any suggestions we would be delighted to hear from you;

Thanking you in anticipation of any assistance you can provide or suggest even outside the terms of reference herein.
Posted on 07/18/08, 06:07 pm