National Invisible Chronic Illness Awareness Week, September 8-14, 2008

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Chronically Ill Enthusiastically Anticipate Virtual Internet Conference Sept 8-12

 

Press Release posted on http://www.sbwire.com/news/view/21215 – some excerpts are below for your reading pleasure as normal…

Traveling expenses, hard beds, peers wearing too much perfume, long treks to conference rooms, and exhausting days make up the typical conference–all which make it nearly impossible for the chronically ill to attend events where they can find encouragement and education. National Invisible Chronic Illness Awareness Week’s “virtual” conference online is more than just practical. It’s necessary

 

One of the ways to meet the needs of the chronically ill is to provide the type of forum where they can learn, connect with others and interact with professionals. For the chronically ill, who typically have difficulty sleeping, extreme fatigue, trouble walking and sitting, and even chemical sensitivities, a virtual conference, where people can stay comfortable, attend free and avoid traveling is the perfect fit. 

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Four seminars per day, Monday through Friday, September 8-12, are available at www.invisibleillness.com and all will be recorded and archived. 

Hundreds of people are also blogging for awareness about invisible illness issues on September 8, 2008. For more information see http://www.invisibleillnessblog.com 

 

Media Relations Contact

Lisa Copen Email Contact 
Director
National Invisible Chronic Illness Awareness Week
858-486-4685
http://www.invisibleillness.com

 

At last this seems to be a step in the right direction for people who suffer badly from diseases like Endometriosis, it will be intresting to see if any post awareness week articles and press releases give us some info on how successful it was.

Neurocrine reports positive results in latest Endometriosis Drug Trials

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Neurocrine studied 252 patients, with a confirmed diagnosis of endometriosis. The company split the group into 3 sets for treatment over 6 months.

  • elagolix 150mg once daily  (new drug)
  • elagolix 75mg twice daily  (new drug)
  • depo provera 104 (DMPA)  (common treatment)
Elagolix showed an improvement of endometriosis symptoms following treatment.
An Improvement in endometriosis symptoms was documented against different pain scales commonly used to rate symptons of sufferers.
In addition the impact on bone density loss was statistically less than on other treatments.
Also on the news the companies shares of course edged higher.

Another wrong News Article….

The story in this news article is a moving one, basically about a woman who has been mis-diagnosed with endometriosis many times when her condition is much rarer – so I do feel for her and we can all relate!.

 

However, the reason why this is apearing here, is that the article goes to explain that endometriosis is:

The common wrong conclusion was that Tara had endometriosis, which occurs when endometrial tissue — tissue normally found only in the lining of the uterus — grows elsewhere in the reproductive system and even in the intestines.

Which we all know is WRONG – on this site we have numerous entries about endo elsewhere, even with a couple about endo in the LUNG which is a little bit removed from the area’s above.  This sort of mis-information doesn’t really help much – though at least they have it right for the majority of known sufferer’s I suppose!

 

Anyway we are going to make a new section for “wrong news on endometriosis” – which might be fun!

 

p.s. original article here http://www.newstimes.com/ci_10386222

Fertility Society Australia 2008 Conference

We hope to start finding out the information about more of these conferences as the site grows and our userbase continues to expand.

For our users from Australia here’s info about the fertility society of australia’s conference dates this year (2008).  Since our personal IVF was successful – and the main reason for needing this was due to the endometriosis causing infertility problems I think these advances are very very important.

Posted on http://info4endo.com/2008/08/29/fertility-society-australia-2008-conference/ .

 

 

When & Where
19 to 22 October 2008
Hilton Hotel, Brisbane
Queensland, Australia

Theme: Working Together For Reproductive Health

The conference theme, “Working Together For Reproductive Health” guided the development of the sessions, though we retained some of the discipline based sessions. This theme was chosen to highlight potential benefits for our patients if we all recognize our respective skill sets and organise ourselves around a common theme. The overall aim of the program is to provide sessions that stimulate further discussions with your colleagues in the many IVF Units in Australia and New Zealand.

Keynote Speakers
John Collins
Bart Fauser
Jonathan Van Blerkom
Andrew Van Steirteghem

Registration is now open. For more information, please visit the FSA Conference website.

 

Some online resources about endometriosis.

I stumbled across the following page today:

http://www.nlm.nih.gov/medlineplus/tutorials/endometriosis/htm/index.htm

It’s quite intresting actually, the information is not all encompassing, but it is good and might be something for partners and family to look at – and even some GP’s and Family Doctors!

Basically there are several ways to view the information – the text view just gives a summary of facts and information on endo, and another view which goes through the tutorial without asking questions.

The best is the first one, which shows the tutorial, it then asks questions throughout just to make sure someone has been reading.  it’s worth a look, I don’t think it’s new – form the copyright around 2004.

But anything that helps people to

  • Understand Endometriosis
  • Learn how it affects women
  • Learn how it might be treated and that options are available.
  • Learn how they can support people with endometriosis.

Points That Should Be Known About Lupron (Prostap)

It has come to my attention that many people are being told that as long as they take HRT they can have Lupron as many times as they wish. This isn’t exactly true.

While it is not illegal for doctor’s to prescribe Lupron (Prostap), it is stated in the leaflet insert that is in the injection kit that: “The safety of
re-treatment as well as treatment beyond 6 months with Lupron has not been established.” This statement indicates that they have no idea how safe it is to have Lupron (Prostap) for more than 6 months at a time, or to even have it for more than one course.

People who have this medication should also have regular bone density scans to check whether or not this medication is affecting their bone density. Anyone who is going to have more than 1 6-month course should definitely make sure they receive one of these scans before beginning another course.

I would also recommend that before starting this treatment, you research the drug very carefully so that you fully understand the impact that it could have on your life.

Endometriosis of the Lung – from Dr Cook Archives

Question:
I’ve been told that endometriosis can spread outside of the pelvic area and I even heard of a woman with endometriosis who’s lung collapsed every time she had a period. Can endometriosis really spread to the lungs?

Answer:
Yes, while it is rare, endometriosis can grow in the lung…

. This is also known as thoracic endometriosis. There are two basic types of thoracic endometriosis. Thoracic endometriosis can be divided into pleural endometriosis (the lining of the lung) and parenchymal endometriosis (the lung itself). The majority of cases of pulmonary endometriosis occur in the pleura rather than the lung itself (about 5:1 – pleura:parenchyma).

PLEURAL ENDOMETRIOSIS:
The vast majority of patients with pleural endometriosis experience difficulty breathing (shortness of breath), pain, and pneumothorax (collapsed lung) or pleural effusion (water on the lung). Over 90% of cases are right sided. It is not uncommon to find small holes in the diaphragm. The majority of patients with pleural endometriosis also have pelvic endometriosis, raising the question if spread of the endometriosis is via the small holes in the diaphragm.

for more information visit
http://www.drcook.com/adca8.html

The above information is an excerpt from the weblink above from the Dr Cook website.

Does Endo grow back ? If so how long does it take to grow back?I have it lasered out last Monday should my symptoms have gone away yet ?

Yes endo can grow back. There is no time length for how long it will take – as it is different for every person. It can take several weeks, if not months, for you to notice any difference as the operation will have left your insides very raw and bruised. Make sure you take it very easy for the first couple of weeks and don’t rush back into anything.

Visitor’s Question No. 1

I have a question about me.For about the past 6 months i’ve had rectal bleeding ONLY when I have my period. I tried going to a clinic and the doctor told me there’s no way it is endometriosis. I know it is and am scared to death. what do I do? I have n

I would go into your gp and ask to be sent to a bowel specialist to start with as having rectal bleeding every month during your period is not normal at all.

How is endometriosis treated?

Treatment for endometriosis varies from surgical procedures to hormonal treatments.

It is advised that before you undergo treatment, you gather all the information possible in order to make the decision that’s best for you.

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