Writer's Guide to Government Information

Resources to inject real life detail into your fiction

Archive for the tag “diseases”

MedlinePlus page on Genetics/Birth Defects

MedlinePlus page on Genetics/Birth Defects – http://www.nlm.nih.gov/medlineplus/geneticsbirthdefects.html

Representative questions that can be answered with this resource:

  • Could someone live a mostly normal life and not know they had Charcot-Marie-Tooth Disease?
  • What is the tallest a human dwarf can be?
  • What are some of the effects of a man having an extra X chromosome, like in Kleinfelter Syndrome?

Description:

Links to specific conditions including:

  • Charcot-Marie-Tooth Disease
  • Dwarfism
  • Ehlers-Danlos Syndrome
  • Fragile X Syndrome
  • Friedreich’s Ataxia
  • Gaucher’s Disease
  • Hemochromatosis
  • Huntington’s Disease
  • Hydrocephalus
  • Klinefelter’s Syndrome
  • Leukodystrophies
  • Maple Syrup Urine Disease
  • Marfan Syndrome
  • Muscular Dystrophy
  • Neural Tube Defects
  • Neurofibromatosis
  • Osteogenesis Imperfecta
  • Phenylketonuria
  • Prader-Willi Syndrome
  • Rett Syndrome
  • Sickle Cell Anemia
  • Spina Bifida
  • Spinal Muscular Atrophy
  • Tay-Sachs Disease
  • Tuberous Sclerosis
  • Turner Syndrome
  • Usher Syndrome
  • Von Hippel-Lindau Disease
  • Wilson Disease

Rare Diseases and Related Terms (Genetic and Rare Disease Center)

Rare Diseases and Related Terms (Genetic and Rare Disease Center) – http://rarediseases.info.nih.gov/gard/browse-by-first-letter/

Representative questions that can be answered with this resource:

  • What would be unusual about appearance of a patient with Harlequin syndrome?
  • What might be unusual about “the plumbing” of someone with 46, XY disorders of sexual development?
  • How might Peters Anomaly interfere with vision?

Description:

Sometimes you want to inflict a character with something special. Not a head injury. Not lung cancer. Not something so ho-hum as cirrhosis.You’d like to give a story character something that no one but him and maybe his family have heard of. You could just make something up, like when Lenier claimed he had “Netter’s Syndrome” in the Babylon 5 episode Convictions. And if the disease is a one-off throwaway, maybe that’s the best choice. But if the disease is going to be an ongoing part of your story, this site can give you lots to work with. It has information on diseases affecting less than 200,000 people in the United States.

The main page allows you to browse by letter of the alphabet, or search by keyword. The keyword search is best if you already have a disease in mind or if you have specific symptoms in mind. If you browse by letter, you may notice that some diseases, like Dancing eyes-dancing feet syndrome appear in bold, while others, such as Degos disease, do not. Bolded entries indicate that the Genetic and Rare Disease Center (GARD) staff have answered a question about that disorder. Otherwise the records should be the same and include the following: description of the disease, sometimes with hyperlinks, a list of alternative names for the discussed condition, References (usually to journal articles).

Each entry will also have a box with the following tabs: more detailed information, NLM Gateway, Services, Scientific Conferences, support groups and clinical trials and research. They will not all be disease specific, but “more detailed information” and support groups usually will be.

It’s pretty much all you need to set up a character with a rare disease and a support system.

Diseases for your character with MedlinePlus

MedlinePlus Health Topics Page – http://www.nlm.nih.gov/medlineplus/healthtopics.html

Representative questions that can be answered with this resource:

  • What’s a lung disorder I could give to a character?
  • What are some cancers where vaginal bleeding is a symptom?
  • What conditions are associated with Sciatica?

Description:

The MedlinePlus Health Topics page has been described elsewhere.  I’m mentioning it again for its specific use in gathering information on diseases that might befall your character.

Search Tips:

If you have a specific disease in mind, I’d suggest either using the alphabetical browse or using the search box in the upper right hand of the screen. If you choose the search, you’ll be searching all of MedlinePlus, not just the Health Topics pages. Sometimes this is helpful, sometimes it’s just more clutter.

If you’re not sure what disease to give your character, there are two ways to go. First would be to explore the body location/systems offerings or a given demographic group (i.e. do you want them to have a lung disorder or something that particularly affects seniors?)

The second approach would be to click on “symptoms” under “diagnosis and therapy.” You can also get there directly with http://www.nlm.nih.gov/medlineplus/symptoms.html. You’ll be presented with an alphabetical list of symptoms. Clicking on a symptom will take you to a topic page that will look much like the topics pages I explained in detail the first time. Look at the summary and at the “specific conditions” list under “Learn More.” This may give you ideas of what disease to inflict on your character. Here are a few examples:

  • Edema (tissue swelling) – Can be a symptom of heart failure, kidney diseases, cirrhosis, and lymph node problems, among other issues.
  • Fatigue – Can be a symptom of chronic fatigue syndrome, cancer, brain tumors, Crohn’s Disease and lupus, among other issues.
  • Hives – Can be a symptom of Food allergy, exercise-induced urticaria and sun allergy, among other issues.

Once you’ve located a promising disease, be sure to click on that disease so you’ll know what other symptoms to put on your character and see what treatments and support organizations exist for her condition.

Sun allergy might be good to give to a character who thinks he’s a vampire. The hives and pain from only minimal exposure are enough to make you think you’re a child of the night.

MedlinePlus Health Topics

MedlinePlus Health Topics – http://www.nlm.nih.gov/medlineplus/healthtopics.html

Representative questions that can be answered with this resource:

  • What are some symptoms of bladder cancer?
  • What happens during an acupuncture session?
  • What challenges might someone with ADHD face in enlisting in the US military?

Description:

In the beginning there was Medline, a medical indexing and abstracting service from the National Library of Medicine. It was aimed at doctors, but once it went on the Internet, patients and other laymen got hold of it and tried to make sense of the very technical medical articles. Sometimes they succeeded, more often they did not.

Enter MedlinePlus, a patient/layman oriented resource that starts with plain English resources and links out to other resources, some general and some technical. I and many of my librarian colleagues agree that MedlinePlus ought to be your first stop for medical information on the Internet. It’s authoritative information with no hidden sales agenda.

MedlinePlus has a number of different sections, each worthy of its own entry. This entry concerns their Health Topics page, where according to the website, “Read about symptoms, causes, treatment and prevention for over 900 diseases, illnesses, health conditions and wellness issues. MedlinePlus health topics are regularly reviewed, and links are updated daily.”

The page gives you a number of ways to browse health topics: Alphabetically, Body Location/System, Disorders and Conditions, Diagnosis and Therapy, Demographic Groups and, Health and Wellness.

All of the topic pages lead to a list of more specific topics, in the case of the Body Location/System pages, there will be an illustration of the Body Location/System you have chosen.

For a given disease topic, such as Gout, you’ll find a page with the following sections:

  • Condition summary (in a blue box) – Will also provide opportunity to get e-mail updates to this topic page and may offer one or two starting points.
  • Links to related articles in the MedlinePlus Medical Encylopedia
  • Related MedlinePlus topics
  • The National Institutes of Health (NIH) unit with primary research responsibility
  • Alternative languages, when available. The Gout page is also available in Arabic and Spanish.
  • Basics (Overviews, Diagnosis/Symptoms, Treatment
  • Learn More (Nutrition, Related Issues)
  • Multimedia & Cool Tools (Pictures, Tutorials, Video)
  • Research (Clinical trials, Genetics, Journal Articles)
  • Reference Shelf (Dictionaries [maybe this is directories?], Organizations, Statistics)
  • For You (Demographic group, Patient Handouts)

Nondisease health topics will look pretty similar except the subheadings under Basics, Learn More, Multimedia & Cool Tools, Research, Reference Shelf and For You might look a little different.

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