Showing posts with label Conditions and Diseases. Show all posts
Showing posts with label Conditions and Diseases. Show all posts

Thursday, November 14, 2013

The Latest In Clinical Trials


"A Way To Provide Help and Hope for you and for others with AAI illnesses and other AI diseases also "



I received a new "Clinical Trial" email yesterday with the current list of Clinical trials you can search through to find that some may be a fit for your illnesses, along with where those are located, what they involve, and to see if you may qualify for one.

These can lead to helping not only the patients who get involved but sometimes leads to helping many others because someone stepped up to the "plate" and decided to do one of these.

You can either "join" for free, or just do a "search" with key words, and then the closeness to your location in miles or zip code.

Here is the URL:

http://www.clinicalconnection.com/SearchStudies.aspx


I recently spoke with a gentleman that happened to have Lupus. We met at a meeting, and when I was telling someone about my own experiences with "prednisone" he asked "Do you have Lupus?" Of course I said yes, along with several other autoimmune arthritic illnesses. We got to speak that evening for a long while and it is amazing the people that seem to be put right into your life just when you least expect it. He had been originally from the Houston TX area. He had participated in a clinical trial and talked with me about it.

He said he had a good experience with the one he participated in. I had wished that someone could have pointed me in the direction of these trials when I was first diagnosed, or barely diagnosed with one of several AI illnesses I have, so I may have been able to STOP or slow down some of the damage that is now too late as far as medication wise now. So, my own experience led me to surgery on several joints, and replacements on three large joints, and a 4 level cervical fusion, discectomy & two artificial discs replaced two of the severely damaged ones.

My own Rheumatologist in fact does research, and also teaches, plus still sees some of his patients. He had talked about a project "one of the clinical trials" that were putting together, and then I found out the place he teaches and does research at in Dallas, is also very well known for all of their clinical trials.

As for myself, before I had found a "great" Rheumatologist (who I thought I might lose in fact to his research and teaching), fortunately I didn't, by the time I really got to know about all of these "trials" I was in a good spot with medications, doctors, tests, labs and so on.

So, rather than let other people get under the radar and not be able to possibly enroll in a clinical trial, I try to make sure and put the URL up when they send me a current list via email. There are absolutely so MANY of them going on, and if you are fairly near a big city, I almost guarantee you can find something that may be of help to you.

Of course there are "trials" on ALL types of illnesses, but when you search for RA, Lupus, Sjogren's, MCTD. UCTD, JA, Still's Disease, Ankylosing Spondylitis, Psoriatic Arthritis, you certainly will find an entire host of trials for those illnesses.

Of course there are so many other Autoimmune Illnesses such as Multiple Sclerosis, and that list is into the hundred's that I am sure there are plenty of trials to go around for many.

It can be a way as I said of helping your own situation, possibly others also, and make way for hopefully a quicker and accurate diagnosis, more medications, possibly more ways to put these illnesses into remission, stop them before they begin, or possibly CURE those that are now suffering from them.


Monday, September 13, 2010

Chronically Ill Unite September 14 to Blog About Invisible Illness Issues

9/9/09 – SBWIRE – SAN DIEGO — Who would guess that nearly half of the U.S. population lives with a chronic illness? But according to a study by the Robert Wood Johnson Foundation over 133 million people have an illness or condition, most of which are invisible, and many that cause daily pain. Illnesses can range from Reflex Sympathetic Dystrophy to diabetes, multiple sclerosis to fibromyalgia, or painful conditions like back pain and migraines.
With 75 percent of internet users using the internet for health information (Pew Internet Project, 8/08) and many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face with daily chronic pain.
National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.
Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves yet living life to the fullest.” Copen says patient blogs aren’t depressing like healthy people may assume. “Illness bloggers don’t typically dwell on the logistics of symptoms, lab tests, or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances, careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness.”
Invisible Illness Week was recently the host of Grand Rounds, the largest medical blog carnival on the internet.
Over 300 people have officially committed to blogging for Invisible Illness Week so far and many are sharing on their Facebook notes page or other social network. Copen encourages those who do not have a blog to shares something about their illness with Facebook friends, a few Twitter posts, or even in the comments section of the invisibleillnessweek.com web site.
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillnessweek.com for details. Invisible
Illness Week’s highlight is a 5-day virtual conference with 20 speakers that can be heard online for free on a topics such as marriage with illness, applying for disability, setting boundaries, and when your child is ill.
Copen is also the founder of Rest Ministries which sponsors the event and IllnessTwitters.ning.com for anyone who “tweets” on health or medical conditions.

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