Here are the improvements I would like to see in the upcoming year:
- More posts: at least 2 a month. Not just from me, but from anyone!
- Design makeover: fancier looking banner, more interesting color scheme.
- More multimedia: Embed acromegaly related videos, pictures, and audio.
- Make some kind of profile page for each contributor to this blog so that people can see a timeline, what kind of treatment each contributor has had, and any other personal info they feel like sharing.
- Some kind of outreach program to raise awareness of acromegaly and therefore help people get earlier diagnosis (and more successful treatment). There are so many other professionals besides endocrinologists that can be on the lookout for symptoms: ophthalmologists, optometrists, dermatologists, dentists, orthodontists, podiatrists, hand doctors, jewelers (adjusting ring sizes), make up artists, etc etc. Can you think of more? Of course the general public should know about acromegaly too. When I think about how long I had symptoms and how long I went undiagnosed and I really want to make so no one else has to go through the same frustration.
- In-person meet up somewhere?
- Get acromegaly to show up in spell check! So frustrating that most software doesn't recognize it as a word!!
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4 comments:
Sounds like some great ideas. I am glad to see everyone coming forward and sharing their experiences with acromegaly. After my surgery I find myself looking at people and wondering "Hey? Do they have acromegaly?" I dare not ask *smiles.*
Thank you, Ellen, for putting the acromegaly bloggers site together...I think it has been a great help to lots of people!
The same happened to me, Alecia!!
The first time I met my boyfriend's dad after my surgery (I had met him before, but I didn't notice anything) I was surprised how big his nose was and how puffy his hands looked like. Obviously, I didn't say anything to him, but I asked my boyfriend if his father had always looked like that!! (Apparently he had always looked the same, so he is not acromegalic...)
You are right, polarchip, about raising awareness of acromegaly: to help others and to take away the label of "dull giant" usually (and wrongly) linked to this condition.
Apologies for being absent for so long. Some good ideas here. I especially like the one about tracking treatments. I don't know two people yet who have had the same combination and dosage of drugs.
Great ideas. Good work. I've been thinking along similar lines myself of outreach to increase awareness. I'm trying to find as many blogs as I can with acromegaly - the list is getting a little bit longer month by month.
Trys
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