I am on the scrounge for some help again. I am currently in the process of putting a web site together to compliment this forum.
As part of this site, there will be a page dedicated to each of the conditions associated with pituitary conditions. What I am asking for is for someone from each department who is familiar with their condition to supply the wording on the web page pertaining to that condition. To keep a standard consistent format for each condition, I would suggest publishing each page under the following headings:
• Name of disease. (Along with the percentage of people who suffer from it)
• Symptoms.
• Causes
• How a diagnosis is reached
• Standard Treatments
• Related conditions
• Links to relevant informational and support sites.
• Coping tips
• any other suggestions?
• Other stuff!
All details will be checked and verified by a relevant qualified medical technician so don’t worry too much about E&OE’s.
I can supply the artwork for each page however, if your research lands you on a web page that has a particularly good image, I would appreciate it if you could give me the address of that page.
Other sections of the web site will include an over view of the pituitary gland in general, a carers section, an “about us” section, a link to a “LIVE CHAT” facility, a benefits section, a “Forthcoming events “ section, a facility to donate funds section, an accounts section. and a downloads section which will include patient care cards, etc. All relevant pages will also be available in a printer-friendly format. All accounts will be audited by a chartered accountant who has kindly offered to do the accounts free of charge as long as I drop him in some free range eggs whenever I call to him!
I must bear in mind that while I have many years experience of web design, I don’t have the necessary letters after my name that would allow me to offer medical advice. While I would like to provide as much information as possible, it is important that the information on the site is useful and pertinent to everyone from the person who is awaiting a diagnosis to those of us who have lived with their condition for a long number of years.
My own condition was investigated by an endocrinologist’s registrar while I was waiting for a helicopter to transfer me to Dublin for an unnecessary emergency craniotomy. He thankfully landed on the Pituitary Foundation web site and discovered that Bromocryptine was better than treating my head like a hardboiled egg.
I took great solace after reading the information provided by the Pituitary Foundation and I discovered that not only was there a name for what was wrong with me, but also in the fact that I wasn’t in fact going nuts having all these seemingly unrelated symptoms! (It wasn’t until later that I went nuts!)
If the site helps just one person to get an earlier diagnosis, or goes half as far to help them as the Pituitary Foundation helped me, it will be well worth it. I will be making it very clear what the web site is, and more to the point – what it is not.
Any pages created using the information supplied by you will be initially put up on a password protected site pending your approval to publish.
I would welcome any suggestions for further headings for the site.
Once again, I am thanking you guys in advance because you have never failed to come through for me.
As a footnote, I would like to add that I was largely off-line for the last week or so due to an adrenal crisis and a certain amount of wallowing in self pity if I were to be honest. When I read the supportive messages on this forum, together with the countless supportive emails I received from people I haven’t even met, to say that it restored my faith in human nature would be the understatement of the century. I received such a lift from you (you know who you are) that takes working for Pituitary Chat from a chore to a humbling privilege.
I have many ideas for developing Pituitary Chat into the future, but I will steer it in the right direction one step at a time.
One decision I made at the outset was that Pituitary Chat was going to be not only a soft place to land for pit folks in times of need, but it will be run by the users for the users. As long as I have a say, that will never change. I acknowledge that I have made mistakes along the way but I have hopefully learned from those mistakes. The trick is to try not to make the same mistake twice!
I have acted far from alone in setting up Pituitary Chat and there are a few people in particular (once again, they know who they are) who would at this stage rather remain anonymous however, Pituitary Chat is not just a forum, Pit Chat is you. It’s the people that have made it what it is, not the web page. I feel very privileged to be involved and I look forward to helping out however I can in the months and years to come.
I have managed many fora over the years and I can honestly say with my hand on my heart that I have never come across such a decent and genuine community of people in all that time.
Apologies for the lengthy posting,
Regards,
Paul
