Talk:Sickle-cell disease

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Let us compile a list of resources on sickle and

  1. identify the ones which are fee so that we can use them on wikipedia
  2. identify those that are written in simple nontechnical language for laymen that we can use in this simple engligh eikipedia and also translate and use for patient/caregiver education --Dr.saptarshi (talk) 11:14, 22 April 2012 (UTC)

List of resources[change source]

  1. Some British/UK Resources:
    1. Some free images from http://www.sicklecellanaemia.org/ are here:
      1. http://www.sicklecellanaemia.org/teaching-resources/resources/scooter44-63/scooter50.html
    2. http://www.sicklecellsociety.org/
      1. http://www.sicklecellsociety.org/websites/123reg/LinuxPackage22/si/ck/le/sicklecellsociety.org/public_html/resources/view/11
      2. http://www.sicklecellsociety.org/sicklescene/pshomf.htm Planet Sickle Cell Society (UK based): Youth support, Poetry, Pen-Pals, Information, Message Board
    3. http://sct.screening.nhs.uk/cms.php?folder=2493
    4. http://www.childrenscbf.org/resource_detail.php?id=24&gclid=CIXcpurHya8CFUR76wodRjWUpA
    5. http://www.b-s-h.org.uk/search.php?q=sickle
    6. http://www.nhs.uk/conditions/Sickle-cell-anaemia/Pages/Introduction.aspx
    7. http://www.spah.scot.nhs.uk/Info%20Leaflets.html
      1. http://www.spah.scot.nhs.uk/Documents/Your%20baby%20carries%20a%20gene%20for%20SC.pdf
    8. http://www.dmu.ac.uk/research-areas/sickle-cell/
  2. WHO/Geneva,Swiss resources:
    1. http://www.gfmer.ch/Guidelines/Anemia_and_hemoglobinopathies/Sickle_cell_anemia.htm
  3. Some American Resources:
    1. http://www.cdc.gov/ncbddd/sicklecell/
    2. http://www.cdc.gov/Features/sicklecellawareness/
    3. http://www.nhlbi.nih.gov/new/sicklecell.htm
      1. www.nhlbi.nih.gov/health/prof/blood/sickle/sc_mngt.pdf -- NIH guidelines for management of all aspects of sickle cell disease (2002)
      2. www.nhlbi.nih.gov/meetings/.../Sickle_Cell_Disease_Workshop.pdf
    4. http://www.scinfo.org
    5. http://www.sicklecelldisease.org/: Sickle Cell Disease Association of America
      1. http://scinfo.org/sickle-cell-clinics-contacts-and-resources
    6. http://www.ncbi.nlm.nih.gov/books/NBK1377/
    7. http://www.sctpn.net/1viralvoice/new-online-reference-book-resource-sickle-cell/
    8. OMIM is far from lay language but still.. http://www.omim.org/entry/603903
    9. A historic 1993 reference http://www.ncbi.nlm.nih.gov/books/NBK52254/
    10. http://www.childrensnational.org/sickle-cell/
    11. http://sickle.bwh.harvard.edu/menu_sickle.html
    12. http://www.nslc.wustl.edu/sicklecell/sicklecell.html
    13. http://www.hopkinsmedicine.org/Medicine/sickle/patient/index.html
    14. http://globalhealth.texaschildrens.org/medical-initiatives/sickle-cell/sickle-cell-education-resources.aspx
    15. http://www.chg.duke.edu/diseases/sicklecell.html#anchor7
    16. http://www.uch.edu/conditions/blood/sickle-cell-anemia/patient-education/
    17. http://www.genome.gov/10001219
    18. The Human Genome Project Sickle Cell Education Site at http://www.massinteraction.org/html/genome/
    19. http://www.ascaa.org/ American Sickle Cell Anemia Association, founded in 1971, is the oldest sickle cell research, education, and social services organization in the United States.
    20. Coloring Books on Sickle Cell from Emory: http://www.emory.edu/PEDS/SICKLE/bbc/index.htm ; http://www.emory.edu/PEDS/SICKLE/chelate/index.htm
    21. kids game http://sicklecell.starlight.org/sc_gui.html
    22. http://www.ncd.gov/search?SearchString=sickle&searchButton.x=0&searchButton.y=0&searchButton=Search
    23. http://www.painfoundation.org/
    24. The New York Times Company. (2009). Effects of sickle cell disease. from About.com: http://video.about.com/rarediseases/Sickle-Cell-Disease.htm
    25. U.S. Department of Energy, Biological and Environmental Research . (2005, May 5). Genetic Disease Profile: Sickle Anemia. from Gene Gateway-Exploring Genes and Genetic Disorders : http://www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/sca.shtml
  4. Some Canadian Resources:
    1. www.sicklecellontario.org/sickle-cell-101/educational-videos
  5. Jamaica/West Indies (Home of Sickle expert Dr Graham Serjeant) has a lot of resources on Sickle.. :
    1. http://www.sicklecelltrustjamaica.com/
    2. http://www.scafcorpint.org/
  6. Some African resources
    1. http://www.sicklecell.md/
  7. Some General resources:
    1. Useful Youtube:
      1. http://www.youtube.com/watch?v=x96ODlFiaEo

Please write comments below this line and add resources above[change source]

Thanks -- Dr.saptarshi (talk) 11:14, 22 April 2012 (UTC)

I have posted a message to attract collaborators from the english wikipedia here en:Talk:Sickle-cell_disease#Free/Simple_language_Sickle_Information_Resource_Compilation.. If possible please add in your plea to attract as many users as you can to power up this project.. And also please post corresponding messages to the other language wikipedians as they will also benefit from this project ;) --Dr.saptarshi (talk) 11:42, 22 April 2012 (UTC)

How to RE-CLASSIFY the resources above.. and how to RE-DISPLAY ?[change source]

Do we rewrite the list in a new format? Should it be a TABLE? What kind of tags can we add? Can we color code? eg some color code for free vs subscribed, some code for childrens vs mature.. may be instead of two way classification we can have grades for each.. eg degree of complexity scale, degree of interactiveness scale, degree of importance scale (difficult to define as it will depend on agenda), richness of picture media, funniness scale, ? How many columns will that be? How many shades for each scale? Does country/geographic resources matter in this forum..? Should we remove those headers? ;) --Dr.saptarshi (talk) 01:34, 23 April 2012 (UTC)

Major reverts to previous misleading info & non-simple English[change source]

Dear Macdonald-ross, Thank you for participating in this article. But next time you intend to revert, kindly discuss. Here are the problems with your revert:

  1. Neither the language of the version you reverted to uses all simple English (eg use of "Pre-modern") nor uses simple grammar (eg use of "respectively")
  2. and it is full of misleading information..
    1. The disease is genetic.. so it goes from one generation to the next within a family.. saying "family to family" does not capture that essence, if you say "family to family" it rather sounds as if it spreads "horizontally" like infection but it does not, it spread only "vertically down" the generations inside a family tree based upon simple Mendelian inheritance of the point mutation in the beta hemoglbin gene..
    2. If you say "heart attack" many people will not agree.. if you would have said "heart failure" it might have been OK.. These simple english words have very very specific technical connotations.. Eg Heart attack is an "acute myocardial infarction (AMI)" usually secondary to an "Acute coronary thromboembolism". It indeed can happen in some sicklers at quite a younger age, and is often missed. It is important to make people aware of that. But that said, heart attack is not as frequent as some of the other crisis!! So an article on sickle patients should not start by something which is not considered characteristic or classical or common about them.. By the time sicklers reach adolescence, they have chronic lung injuries due to recurrent acute chest syndromes. Acute chest syndrome is generally due to pneumonia or pulmonary infarction, and the third commonest cause may be pulmonary thromboembolic events.. but more in situ lung vessel thrombi than systemic emboli and even when systemic they are are often bone marrow emboli rather than simple thromboemboli.. these recurrent vasoocclusive events lead to pulmonary hypertension that adds to secondary heart failure on top of direct chronic effects that compromize the heart muscles which can cause cardiac ischemia, but of a somewhat different flavor than a regular "heart attack" due to a major coronary artery blockade. Here is one of several articles which comment on it.. we better move that controversial piece down into the content (many would agree AMI in sicklers is still a controversy.. since the arteries are not blocked.. but there is ischemia)
    3. "Clot" is also not really true in its strict sense.. The vaso-occlusion is partly clotting, but more of sludging, adhesion, vasospasm etc.. kind of log jamming and piling up of long sticky and stiff RBCs (not too much fibrin mesh as would be seen in a "clot") .. and the vaso-occlusion can be partly reversed when the sickling reverses, without requiring a thrombolysis... thus, sicklers are chronically hyperthrombotic - true, but episodic sickle vaso-occlusion is a phenomenon far more complex than can be captured by a misleading term clot.. Blockade is closer to the truth than a clot.. I didnot like the term clot..but instead of deleting/replacing the term I added some clarification right next to it.. you have thankfully reused that part of my content later in the text.. But you have dissociated my explanation and left the word clot at the beginning, we should rather replace the word clot with blockade.. (occlusion in the technical language)
  3. The headers you have used are also not very appropriate. Use of "the disease" for the second section is weired.. the whole article is about the disease.. and the proximate cause or mechanism of the complication is already discussed here.. and now the third section gets a header "the cause" and there is one sentence about the gene - the remote cause.. then a long patch about the life expectancy.. and then some more genetics.. how does life exceptancy constitute the cause? and what about the proximate cause which is already discussed in the previous section?
  4. You have made other haphazard edits as well - now the reference about malaria is stiing next to the heart attack and stroke.. You have made it into a major mess!! I will clean it up and add more good content.. But for heavens sake doent make such mess again..If you have objection to my language or my formatting or you think you have a different fact kindly discuss and show references if you disagree about facts. Please dont try to make any further reverts without discussion.

--Dr.saptarshi (talk) 16:02, 25 April 2012 (UTC)

For the visitors to this page, if my above criticism looks harsh I beg your apology. If someone adds useful content I will be happy to help format it and build up on it.. and wikipedia is always a work in progress.. but cleaning up is one thing.. and major complete reverts without a warning or discussion is another thing: never do that.. If someone is new here or new to the subject and makes an addition of some partially verified information, others can chip in and polish on it. Nobody owns a content here and content can always be modified, but if if it is a major modification or especially a revert, then it warrants a discussion/justification/if factual change then citations. After a lot of polishing of facts if a previous contributor comes back and wants to reverse it to the half truth that is something of doubtful intention. Hence my indignation. It is neither meant to be a personal criticism nor attachment to contents I contributed. It is a cautionary message to prevent an edit war. --Dr.saptarshi (talk) 17:15, 25 April 2012 (UTC)