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Diane
Forrest, RN
As a transfusion was being readied, the baby's
grandmother suggested to doctors that he looked like the "blue Fugates of
Troublesome Creek." Relatives described the boy's great-grandmother Luna
Fugate as "blue all over," and "the bluest woman I ever
saw."
This is a very rare condition called methemoglobinemia,
the hemoglobin is unable to carry oxygen and it also makes it difficult for
unaffected hemoglobin to release oxygen effectively to body tissues. Patients'
lips are purple, the skin looks blue and the blood is "chocolate
colored" because it is not oxygenated, and it is not painful or life
threatening. You almost never see a
patient with it today. It's a disease that one learns about in medical school
and it is infrequent enough to be on every exam in hematology.
Click here to read the entire story:
http://gma.yahoo.com/fugates-kentucky-skin-bluer-lake-louise-200247843--abc-news.html
Another story I came across recently is a rare skin
condition called Morgellons. It is a
condition characterized by a range of cutaneous (skin) symptoms including
crawling, biting, and stinging sensations (formication); finding fibers on or
under the skin; and persistent skin lesions (e.g., rashes or sores). Doctor's and Dermatologists have concluded
that this condition is a psychosis, self-inflicted or imagined. There is still research being done on this
condition, and findings are still being reported.
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Today is International Rare Disease Day.
What is a rare
disease?
- Rare disease is life threatening or chronically debilitating diseases with a low prevalence and a high level of complexity
- 6000 to 8000 rare diseases have been identified
- 80% are of genetic origin
- 50% affect children
- No cure exists for the vast majority.
Any disease affecting fewer than 200,000 Americans is
considered rare. There are nearly 7,000 such diseases affecting nearly 30
million Americans.
What is Rare Disease
Day?
The main objective of Rare Disease Day is to raise
awareness amongst the general public and decision-makers about rare diseases
and their impact on patients’ lives.
The campaign targets primarily the general public but it
is also designed for patients and patient representatives, as well as
politicians, public authorities, policy-makers, industry representatives,
researchers, health professionals and anyone who has a genuine interest in rare
diseases.
To provide equity in access to care and treatment for
everyone in the world by:
- Strengthen one voice of patients;
- Give hope and information to patients;
- Bring stakeholders closer together;
- Coordinate polity actions in different countries; and
- Get equity in access to care and treatment.
Ways you can help:
- Display posters, images or other awareness raising media such as balloons;
- Distribute stickers and flyers;
- Organize rare diseases events around topics paramount to patients;
- Organize a competitive event focused on rare diseases;
- Coordinate letter writing or email campaigns to local policy or national policy decision makers; and
- Arrange to meet with local and national authorities.
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Links to check out regarding Rare Diseases are:
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