Petition Tag - syndrome

1. Parental Alienation by Social Services in Ire: & the UK

Parental Alienation Syndrome vs. Parental Alienation:
Which Diagnosis Should Evaluators Use in Child-Custody Disputes? when a child has been taken into foster care, should Social Services be allowed to use a Victim of PAS evidence against them.

To help you decide please visit my Website PAS by Social Services

2. Label all Topical Steroid Cremes for Potential Severe Rebound Side-Effects

We are a group of suffering people and children from all over the world who were prescribed topical steroids for various skin conditions and got addicted without any warning of the serious side-effects and potential addiction if used for over two weeks.

You can read our stories, see horrific pictures from our group, and read documented medical studies describing those afflicted along with their details of steroid creme addiction and withdrawal.

3. Illinois to Recognize National Fibromyalgia Day on May 12th

National Fibromyalgia Awareness Day has been declared on May 12th. We want Illinois to recognize this day to raise awareness for this cause.

Fibromyalgia is a silent syndrome that no one can see but the pain is real!

4. Establish a body to support Rare conditions in Australia

A condition (disease, syndrome or disorder) is classed as rare if it affects less than 1 in 2000 people.

There are approximately 8000 known rare diseases, collectively affecting 6-10% of the population. Rare diseases have the following common features;

* Most begin in childhood (usually diagnosed in children aged < 2years) and continue throughout life
* Obtaining a definitive diagnosis is often difficult and delayed creating great stress for those involved
* Many rare diseases have no cure and some can be prevented
* Neurological & intellectual disabilities occur in about 1/2 of all cases
* Families experience isolation, psychological and financial stress
* Health professionals have inadequate access to information, education and resources
* 35% of deaths in children aged < 1 year are due to rare diseases
* ~10% of deaths in children aged between 1 and 15 are due to rare diseases

Research, awareness & money are understandably directed at more common diseases & disorders. Collectively, rare diseases are as common as diabetes- which has been described as a National Epidemic!

Belgium, Denmark, Europe, France, Germany, Greece, The United States, Italy, Netherlands, Canada, New Zealand, Spain, Sweden, Taiwan all have National bodies to support rare diseases.

The United States have just announced new initiatives that put Australia even further behind! See - (New Program to Develop Therapeutics for Rare and Neglected Diseases).

Research into rare diseases can be virtually non existent, support groups are the same.
To set up a Not for Profit organisation requires committed parents who are by law required to have regular meetings and maintain a constitution - how do you do this if your numbers are limited?

Development of a therapeutic for a rare condition is not a priority for a pharmaceutical company - who would buy it? where would the profits come from?

A recent email from the Australian minister from health says:
"At present some members of the Human Genetics Society of Australasia (HGSA), in collaboration with support groups, are looking at a strategy for developing a rare disorders organisation as well as policy around this matter. These members are trying to establish a group to engage at a Federal level and look at provision for rare disorders but I believe this is only at an early stage. It has nevertheless been flagged as a service gap."

Is identifying this as a service gap good enough?

5. Petition for Ontario to save Szymon who suffers from Hunter's Syndrome

Please join this petition to pressure Ontario to provide care to Szymon. He suffers from a very rare genetic disorder called Hunter's Syndrome or MPS II.

This devastating progressive syndrome affects the whole body, major organs, joints.

Currently the Ontario drug plan refuses to cover the cost of a therapy which not only could dramatically increase the quality of life of Szymon but is also potentially life saving. This treatment is funded in British Columbia and Alberta. Medicare should cover everyone regardless of the illness or location.

More info:

6. Harsher Punishments For Shaken Baby Syndrome

July 15 2000 William D. King, 25, father of Preston king, was charged with second degree manslaughter, which carries s mas. penalty of 10 yrs, after his son died at the Universtiy of Ky d/t shaken baby syndrome.

More cases continue to build as preps are recieving a "slap on the hand" for killing and/or premanetly damaging children that are ages newborn to 4 yrs old.

7. End the Pro-ED madness

About 11 million people in the united states have an eating disorder. 10-15 percent of those people die from heath-related issues associated with eating disorders.

In a study of girls aged 9 to 15, slightly more than half reported exercising to lose weight, slightly less than half reported eating less to lose weight, and approximately 1 out of 20 reported using diet pills or laxatives to lose weight.

Research has shown that approximately 40 percent of fourth graders have been on a "diet" once in awhile. Research from Anorexia Nervosa and Related Eating Disorders, Inc. (ANRED) suggests that about 1 percent of female adolescents have anorexia. That means that about 1 out of every 100 females between the ages of 10 and 20 are not eating enough and should be seeing a doctor.

Bulimia affects 1 to 3 percent of middle and high school girls.

Boys and men develop eating disorders, too. Research from ANRED suggests that 5 to 10 percent of people with anorexia or bulimia are males.

With these risks and statistics in mind, would you think there would be a such thing as PRO-ED?

Pro ED (pro eating disorder) is basically glamorizing eating disorders. Would you want to glamorize this:

The following are issues related to eating disorders:

Cold intolerance
Dry skin
Distorted body chemistry
Anemia/altered blood count
Loss of period (amenorrhea)
Gastrointestinal problems
Rotting teeth (induced by bulimia)
Electrolyte Imbalances
Hyponatremia (related to "water-loading")
Refeeding Syndrome (related to treatment)
Vitamin and Mineral Deficiencies
Lanugo .
Muscle Atrophy
Tearing of Esophagus
Esophageal Reflux
Callused or bruised fingers
Dry Skin and Hair, Brittle Hair and Nails, Hair Loss
Low Blood Pressure, Hypotension
High Blood Pressure, Hypertension
Low Platelet Count or Thrombocytopenia -
Low Blood Sugar/Hypoglycemia: can indicate problems with the liver or kidneys and can lead to neurological and mental deterioration.
Arthritis (degenerative)
TMJ "Syndrome" and Related TMJ Problems
Easily Bruising Skin
Problems during pregnancy
Lowered body temperature
Cramps, bloating, constipation, diarrhea, incontinence -
Peptic Ulcers
Pancreatitis -
Digestive Difficulties
Weakness and Fatigue

With those risks in mind, I feel that Pro-ED sited should be shut down. I feel that they are as bad as sites telling people how to commit suicide. These sites are also triggering for those who are in recovery of this disease.

8. Hear Our Voices: FMS, CFS, CFIDS, CMPS, MCS

For those of us who live with these invisible illnesses (Fibromyalgia Syndrome, Chronic Fatigue Syndrome, Chronic Fatigue and Immune Dysfunction Syndrome, Chronic Myofascial Pain and Multiple Chemical Sensitivity) this Petition is for you.

It is our hope that together we can make a difference in the education of the medical personnel; not only that these illnesses will be required teaching in their schools but also that courses are made available for current physicians and nurses in their Continued Education Requirements.

The medical community needs to know what these illnesses are, to realize they are very real and not just waste basket diagnoses or all in our heads. It's time for us to step up to the plate and demand that our voices be heard.