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--- resources:resource [2021/04/17 20:43]
bpaddock [Invisible Disabilities Association]
+++ resources:resource [2021/04/17 20:47]
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-{Updates to this page will be on going.  Feel free to ask [[:bpaddock:contact_hubby|Hubby]] for an account if you want to comment, click 'Discussion' in the bottom left of the page when logged in, or add your own organization.}
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-**[[:resources:papers|Papers by various doctors and their background if known.]]**
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-Commonly cited Non-Authoritative Sources related to CSF Leaks:
-[[wp>Spontaneous_cerebrospinal_fluid_leak|Spontaneous cerebrospinal fluid leak]]; Some information here is inaccurate.
-<WRAP>
-[[wp>Glymphatic_system|Glymphatic System]]:
-<blockquote>The pathway consists of a para-arterial influx route for cerebrospinal fluid (CSF) to enter the brain parenchyma, coupled to a clearance mechanism for the removal of interstitial fluid (ISF) and extracellular solutes from the interstitial compartments of the brain and spinal cord.</blockquote>
-</WRAP>
-[[wp>Microglia|Microglia have been implicated in neuropathic pain.]]
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-Support resources on the Web, listed alphabetically, CSF related listed first:
-[[http://neuropathology-web.org/chapter14/chapter14CSF.html|Chapter 14
-CEREBROSPINAL FLUID]] from Neuropatholog: An illustrated interactive course for medical students and residents.
-[[http://www.csfleak.org|CSF Leak]] support board.
-[[http://www.csfleak.info/|CSF Leak Info]] by fellow leaker, who has been adding information far faster than we can do here.
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-[[http://www.asap.org|American Syringomyelia & Chiari Alliance Project (ASAP)]]
-[[http://arachnoiditisnz.org/|Arachnoiditis Sufferers and Monitoring Society of New Zealand (ASAMS NZ)]]
-[[http://www.companionarts.org|Companion Arts National non-profit organization providing Caregivers with innovative new resources, programs and products.]]  You are not the first person in the world to take care of a loved one.  Seek guidance from those that are going down the same road that you are on to help your loved one.
-[[http://www.chiariassociation.org|Chiaria Association]]
-[[http://www.csfinfo.org|Chiari and Syringomyelia Foundation]]
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-Elhers Danlos Syndrome for unknown reasons is frequently found in conjunction with CSF problems.  EDS is the most common thing to come up with CSF Leaks.  I need to add a lot more about it here.  Some even speculate EDS is a cause of CSF Leaks in many people.
-  * //{{youtube>H0jaF6Rnuv4>}}If you Can't Connect the Issues, Think Connective Tissues!// by Dr. Heidi A. Collins.
-  * [[http://ednf.org|Ehlers-Danlos National Foundation]]
-  * [[https://www.rareconnect.org/uploads/documents/elhers-danlos-wallet-card-en.pdf|Elhers Danlos Wallet Card (English)]]
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-[[http://headachenetwork.ca|Headache Network Canada]]
-[[http://www.injuryresources.com|Injury Resources]] See my page on [[:resources:sideways_whiplash|Sideways Whiplash]] about their products.
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-====== Invisible Disabilities Association ======
-[[http://www.InvisibleDisabilities.org|{{ :resources:invisible_disabilities.png?250 }}]]
-Feel free to share our Invisible Disabilities Association MEME's. We can all work together to bring awareness, education and support!
-The IDA Team: \\
-[[http://www.InvisibleDisabilities.org|Invisible Disabilities Association]]
-IDA Communities: \\
-[[http://www.InvisibleDisabilitiesCommunity.org]] \\
-IDA Social Media: \\
-[[http://www.Facebook.com/InvisibleDisabilities]] \\
-[[http://https://plus.google.com/+InvisibleDisabilitiesOrganization]] \\
-[[http://www.Twitter.com/InvDisabilities]] \\
-[[http://www.Facebook.com/InvisibleNoMoreTV]] \\
-IDA Videos: \\
-[[http://www.YouTube.com/InvisibleDisabilities]] \\
-[[http://www.YouTube.com/InvisibleNoMoreTV]] \\
-IDA Special Projects: \\
-[[http://www.CleanerIndoorAir.org]] \\
-[[http://www.InvisibleHero.org]] \\
-[[http://www.InvisibleNoMore.TV]] \\
-[[http://www.Programs4People.com]]
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-[[http://www.foresttennant.com/pdfs/Intractable-pain-guide-to-pain-free-hours.pdf|Intractable Pain Guide to Pain Free Hours]]
-[[http://www.rarediseases.org|National Organization for Rare Disorders (NORD)]]
-[[http://paindatabase.nih.gov/|Interagency Pain Research
-Portfolio (IPRP)]]: Database that provides information about pain
-research and training activities supported by the federal government.
-See also
-http://www.nih.gov/news/health/may2014/ninds-27.htm#http://www.kpaddock.com
-[[http://www.irs.gov/taxtopics/tc502.html|IRS Topic 502 - Medical and Dental Expenses]]
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-[[http://www.recallreport.org|Recall Report]] was created to provide comprehensive health and safety information relating to dangerous medications and products.
-The number of drug recalls issued by the FDA has ballooned in recent years, from just 166 in 2004 to well over 1,000 in 2014. Too many of these recalls come after patients or consumers have been harmed. For example, 64 people died in 2012 from fungal meningitis contracted from contaminated steroid injections. These injections and others like it were eventually recalled.
-In 2013 Johnson & Johnson was found guilty of illegally marketing Risperdal, an antipsychotic medication known to be harmful to young and elderly patients, and a drug that has been recalled multiple times.
-Because information like this is more important than ever, [[http://www.recallreport.org|Recall Report]]  also features up to date news and press alerts on the most recent recalls and warnings.
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-"The [[http://spinalcsfleak.org|Spinal CSF Leak Foundation]] was established in June 2014 by individuals affected with spinal CSF leaks.
-We were involved in setting up and maintaining an online forum for education and support."
-Also found on [[https://www.facebook.com/Spinal.CSf.Leak.Foundation?ref=br_tf|Facebook]], [[
-https://twitter.com/spinalCSFleak|Twitter]] and [[http://csfleak.org/index.php?topic=1037.0|CSFLeak.org]].
-The Foundation is [[http://spinalcsfleak.org/resources/|adding papers and videos]] regularly.  One of the best resources to be found on CSF Leaks.  Also to be found there is //[[http://spinalcsfleak.org/resources/q-a-with-dr-schievink/|Questions & Answers with Wouter Schievink, MD; April 2014]]// which is **required reading**.
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-[[http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory|"The Spoon Theory": Now to explain Chronic Pain to the non-sufferer.]]
-[[http://www.spondylitis.org|Spondylitis Association of America]]
-  * At one point I was diagnosed with having [[http://www.nlm.nih.gov/medlineplus/ency/article/000420.htm|Ankylosing spondylitis]] tho I did not have the [[http://www.nlm.nih.gov/medlineplus/ency/article/003551.htm|HLA-B27]] marker for this disease.
-[[http://www.sijdfoundation.org|The Sacroiliac Joint Dysfunction (SIJD) Foundation]]
-[[http://www.tarlovcystfoundation.org|Tarlov Cysts Foundation]]
-[[http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm|Tethered Spinal Cord Syndrome Information Page (Tethered Cord)]].  After my autopsy someone thought I might have had this?
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-Support groups on [[https://www.facebook.com|Facebook]], listed alphabetically:
-[[https://www.facebook.com/ArachnoiditisSocietyForAwarenessAndPrevention?fref=http://www.kpaddock.com|Arachnoiditis Society for Awareness and Prevention (ASAP)]].  The condition remains unrecognized and often undiagnosed when the cause is linked to invasive spinal procedures such as injections.
-[[https://www.facebook.com/groups/205294772993306/|Chiari, My War Has Only Just Begun, educational]]
-[[https://www.facebook.com/groups/chronicpainsufferersunite/|Chronic Pain Sufferers United]]
-[[https://www.facebook.com/groups/31002608753/|CSF LEAKS (Cerebrospinal Fluid Leak) & Intracranial Hypotension]]
-There is more collected wisdom in this group than you'll find in any text book or individual doctor.  From hard won knowledge by the sufferers.
-[[https://www.facebook.com/groups/csfleakCanada/|CSF Leak Canada]]
-[[https://www.facebook.com/groups/csfleakresearch/|CSF Leak Research]]
-[[https://www.facebook.com/groups/529862713757429/|CSF LEAKS (UK AND OTHERS)]]
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-[[https://www.facebook.com/groups/floxies/|Fluoroquinolone Toxicity Group]]
-[[https://www.facebook.com/QuinoloneVigilanceFoundation|Quinolone Vigilance Foundation]] is part of [[http://www.saferpills.org|Safter Pills dot Org]].
-{{youtube>https://www.youtube.com/watch?v=xIquu3wwUas}}
-[[http://www.10news.com/news/investigations/patients-experts-popular-antibiotics-could-cause-permanent-damage-11242014|Fluoroquinolone damage is even making the main stream press now it has gotten so bad!]]
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-[[https://www.facebook.com/groups/1417037428584481|OPEN Ehlers Danlos Syndrome Group]]
-[[https://www.facebook.com/groups/547225588655270/|Patients of Dr. Schievink!]]
-[[https://www.facebook.com/groups/644320112290719/|PTC/IH Posts, Thoughts,  Memes and Comic Relief]]
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-Christy from [[http://wondermoms.org/|[http://wondermoms.org/]] passed on these resources that might help families with special needs during this very trying time of COVID:
-  * [[https://www.justgreatlawyers.com/legal-guides/special-needs-trusts|Special Needs Trusts: What Parents and Caregivers Need to Know]]
-  * [[https://sesamestreetincommunities.org/topics/traumatic-experiences/|Resources for Kids in Trauma]]
-  * [[https://www.bigrentz.com/blog/sensory-friendly-home-modifications-autism-sensory-processing-disorder|Creating a Sensory Friendly Home]]
-  * [[http://www.rent.com/blog/how-to-find-an-accessible-apartment/|How to Find an Accessible Apartment]]
-  * [[https://www.health.harvard.edu/blog/making-special-education-work-for-your-child-during-covid-19-2020102621189|Making Special Education Work for Your Child During COVID]]
-  * [[https://www.apartmentguide.com/blog/disability-apartments-looks-features/|Looks and Features of Accessible Apartments]]
-  * [[https://www.apa.org/topics/covid-19/disability-tip-sheet|Coping with Covid Stress]]