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The Power Of Patient-to-Patient Groups

The Power Of Patient-to-Patient Groups | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it

By Laurie Edwards, Next Avenue Contributor

When I received a diagnosis of primary ciliary dyskinesia, a rare genetic lung disease, 10 years ago, one of the first things I did was look it up on the internet. The disorder, known as PCD, is a rare or “orphan” disease, meaning it affects fewer than 200,000 patients in the United States. With only 400 appropriately identified PCD patients in the country, I certainly didn’t know anyone else with the condition. I was 23, I’d been seriously ill since birth, and I wanted to know what I could expect now that my symptoms finally had a label.

Enter the internet and its robust network of patient-to-patient groups. Within a few days of my diagnosis, I’d found listservs, Yahoo groups, a patient advocacy foundation and, later, Facebook groups for patients with my disease and related conditions. The majority of my basic medical knowledge about PCD came from my specialist and respiratory therapists. But I gained much of my insight into the emotional aspects of living with this incurable disease from the anecdotal experiences and shared wisdom of other patients, who answered such questions as: How long would it take my skin to adjust to daily chest physiotherapy, in which the lobes of the lungs are clapped vigorously to help break up secretions? How would this disease influence my mortality? Would I be able to have children? (After a long journey, I am now the parent of a healthy toddler, thanks in no small part to the support and advice of other PCD patients.)

Research from the Pew Internet and American Life project has found that 81 percent of healthy adults report going online regularly, compared with 62 percent of those living with at least one chronic condition. This disparity is attributed to lack of digital access, though, not a lack of interest. And once demographic variables are controlled, being chronically ill significantly increases the likelihood that a person will report working on a blog or contributing to an online discussion, listserv or other Web-based forum that helps people with personal or health problems.

In “Peer-to-Peer Healthcare,” another report from the Pew project, 1 in 4 patients living with high blood pressure, heart disease, diabetes, lung conditions, cancer and other chronic conditions reported turning to the Internet to connect with others who share the same diagnoses, illustrating the widespread desire we have to identify, learn from and support one another.

For the estimated 133 million Americans who live with at least one chronic condition, this shift to patient-centered networks represents a new, more empowering mode of communication, rather than the more narrow one-way dissemination of health facts from doctors alone. It was through a social media patient group that I was able to arrange an in-person meting with another PCD patient — it will likely be the one and only time I ever sit face-to-face with someone else who shares my diagnosis.

(MORE:When Medical Bills Pile Up, Can You Crowdfund Your Health Care?)

It was incredibly validating for me finally to have an accurate diagnosis of my condition and to have entry into a virtual community of people just like me. For millions of others who live with controversial, poorly understood or otherwise neglected disorders, particularly pain-related conditions like fibromyalgia, chronic fatigue and many autoimmune diseases, patient groups offer similar camaraderie and emotional support. Often, such patients feel disenfranchised from the medical establishment that is supposed to help them receive appropriate diagnoses and ongoing care. An “us versus them” mentality is, in many cases, inevitable.

In decades past, patients’ rights activism often included in-person protests and physical mobilization — the disability rights and women’s health movements of the 1960s and ’70s are compelling examples of this. Today, such advocacy groups have adapted particularly well to the virtual environment. These online platforms provide more than emotional comfort. They offer opportunities to get involved in clinical trials and disseminate (and sometimes finance) medical research. They can also be powerful advocates for new research, more effective treatment and improved social support systems for patients and families.

Again, for patients with more marginalized conditions — Lyme disease or chronic fatigue syndrome, for example — the sharing of information and virtual mobilization for research and acceptance is particularly significant. Illness can be incredibly isolating, especially for patients whose symptoms and diagnoses are routinely dismissed by the medical establishment. For these people, patient-to-patient networks don’t simply supplement more traditional support — often, they are the only sources of it.

(MORE:Stop Lying to Your Doctor)

Yet for all their benefits, virtual patient groups and networks also present challenges. Individual experiences that may be extreme examples of disease symptoms or trajectory may get amplified in an online echo chamber, and potentially misleading or confusing information may be repeated as if it is the norm. Alternative interventions may be perceived as accepted medical treatments, leading patients to adopt approaches that might not be fully vetted for safety or appropriate for all patients. Advocates who may lack the health literacy or research experience to interpret data might unwittingly misconstrue published results.

(...)


Via uri goren, Lionel Reichardt / le Pharmageek, Agathe Quignot, dbtmobile
lloyd stanley gordon's insight:

Nothing  ought to be  said  against  the  formation of  support  groups  whether  solely  patient centred,  or  including  persons  who  simply  wish to share their knowledge  or experince  in  a group  of  persons  having  a  designated  dis-ease. The  fact  that the  I-net  makes it possible  to  widen  the  circles  of  participating  groupies  should  be  seen as  a plus since  some  of the drawbacks  arising  from  any tendency  for participating    patients,  or  family  members,  or  their  friends  to  create  a  kind of  centrism  or  focus  on  themselves  as  knowing, or  having discovered the  unique solution to  the  health challenge in question.Personally, I  am  not  in  favour of  purely  Alternative  interventions  since  sometimes  these run the risk of  being  inappropriate  for  coping with the  duration  of the illness  when  a  combined  naturopathic,  and  allopathic  approach would  be  more  effective. This  argues, then, in  favour  of   an  Integrative  Approach   and is now  being seen  as the new  Medical Paradigm  in  practitioner  selection  for intervention  in  treating  illnesses.

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Laboratory-grown vaginas implanted in patients

Laboratory-grown vaginas implanted in patients | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Scientists reported the first human recipients of laboratory-grown vaginal organs. They have described long-term success in four teenage girls who received vaginal organs that were engineered with their own cells.

Via Ioannis
lloyd stanley gordon's insight:

This  very  absorbing,  and  utilitarian  technology  could  be  used  to  grow  new  sections  of the  Gastro-Intestinal  tract,the  anal  region,  also  the  mouth  and  nostrils. This  opens  up  new  possibilities  for  plastic  surgery  to  restore  badly  damaged  interiors  of  organs  such as  the  stomach,  and  the  oesophagus  when  damaged  due  to  Gastro-oesophageal Reflux  Disease  could  likewise  be  repaired.

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DNA explained via a beautiful animation

DNA explained via a beautiful animation | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Three minutes is a short time to explore a subject where most doctorates only scratch the surface, so writer Andrew S. Walsh teamed up with molecular biologist Dr Matthew Adams to distil the script down to the most fundamental elements required to understand not only DNA’s form and function but how our understanding of these discoveries has affected the wider world. While this length may feel restrictive, the team found that this limitation acted as a lens, focusing the piece on the essentials.

Via Olgy Gary
lloyd stanley gordon's insight:

A  beautiful  approach  to  teaching the  subject.

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Bowelscan: The simple test that could save your life - Manning River Times

Bowelscan: The simple test that could save your life - Manning River Times | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Bowelscan: The simple test that could save your life Manning River Times Since the Rotary Bowelscan was introduced in the Rotary district 28 years ago, 604 people have been picked up with cancer and more than 3000 people having polyps removed that...
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Get  on  track  with  this  new  development  in  healthcare  monitoring.

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Coding related to cerumen removal - Healio

Coding related to cerumen removal - Healio | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Coding related to cerumen removal
Healio
Upon examination of the ears, all you can see is impacted cerumen. There is no cervical adenopathy and there is minimal post-nasal drip.
lloyd stanley gordon's insight:

A  very  interesting  tid bit  on  coding  which  is  an  relatively  new  topic  to  me. A  few months  ago  some  information  was  sent to  me  concerning  coding  and  I  found  it  quite  abstruse.  This  post  makes  it  seem  quite  simple,  or  perhaps this  is  just  one  aspect  of  it. We  worth  a  read  nonetheless.

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On my way to see my doctor about this... - Laurette Williams | Facebook

On my way to see my doctor about this cough. I doubt it's not much more than allergies or my post - nasal drip on overdrive, but just making sure.
See... (On my way to see my doctor about this cough.
lloyd stanley gordon's insight:

If  it  is  a  dry  cough  check  it  out  for  sure  as  it  could  signal  heart  problems, otherwise hesitate  to  pursue  other  than  a  naturopathic  solution as  the  bowel  tract  will  always  be  offended  by  pharmaceuticals  of  a  drug  character.It  is  noteworthy  that  some  pharmaceutical  companies  are  moving in the  direction  of  herbal/botanical preparations.

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7 Home Remedies for Post Nasal Drip | Vital Home Remedies

7 Home Remedies for Post Nasal Drip | Vital Home Remedies | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
7 Home Remedies for Post Nasal Drip. With Step-by-Step directions. (7 Home Remedies for Post Nasal Drip http://t.co/5s8T7andcO)
lloyd stanley gordon's insight:

These  home  remedies  ought  to  be  welcome  since  they  offer  an  alternative to  the  use  of  drugs which can  have  a  long  term  effect  on  the friendly  bacteria  in the  G.I.T.,  as  well  as  the  lining of the  tract.

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Safe-Swaps review - what is it?

Safe-Swaps review - what is it? | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it

Safe-swaps  A website were all the list builders, solo providers, and Internet marketers hang out. The site provides the tools and rating system to allow you to either purchase a solo ad or swap email solos with others with the confidence that you are not getting ripped off!


Via Larry Nunn
lloyd stanley gordon's insight:

Safe -swaps  can  help  the  creative  scientist  to  get  his  products  into  the  market  place  without  plodding  the  pavements  to  do  so. It  is  a  wonderful  system  for  marketing  by  barter.

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Care and treatment of piles. fistula. prolapsus ani. fissures anus ...

How to find the most effective treatment to get rid of Hemorrhoids, piles, internal hemorrhoids, bleeding hemorrhoids, external hemorrhoids and hemorrhoids during pregnancy without surgery but naturally through natural ...
lloyd stanley gordon's insight:

This  article  is  an  absolute  Godsend  that  has  the  potential  for  speaking to the  condition of  many  people. Heaven  rewards  those who  help themselves  or  show  a  capacity  for  self-reliance  so  learn  from this  post  if  you  are  a  sufferer  from this  very  embarassing  disease.  Oddly  enough,  on the island  of  Jamaica  where  it  would  appear that  'Deadly  Miscreant  Dark  Forces' are  at  play,  even  in  theatres  of  supposed  relative  innocense, a  significant number  of  people  seem  to  think that  the  sufferer  of  haemorrhoids,  and  rectal  prolapsus  must  be  one  engaging in  homosexual  coitus. Nothing  could  be  further  from  the  truth for  numerous  sufferers. Women  residing  on  the  island  are  in  consequence  less  likely  to be  embarrassed  by  having  to  seek  medical  help, in  particular  from  a male  Caregiver,  for  this  illness.Quantum  Organiculture  Institute  offers  effective  approaches  to  self-help  for  Haemorrhoid  sufferers. Contact  us  at  qoinst@gmail.com.  Payments  may  be  made  to  PayPal  for  agreed  inputs  including  e-leaflets  detailing  Naturopathic  Care by  using  the  account  email:lloydg@ymail.com. Contact  us  by  telephone  at  876-342-6866(Lime)/876-8548429(Digicel).Conversations  should  be kept  as  brief  as possible  due to  the  likely  impacts  from  Radio Frequencies  from  the  cell  phone.

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Put an End To Persistent Coughing - GlobeNewswire (press release)

Put an End To Persistent Coughing - GlobeNewswire (press release) | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Put an End To Persistent Coughing
GlobeNewswire (press release)
The most common reason for a pestering cough is post-nasal drip. During a cold or sinus infection, post-nasal drainage is like a leaky faucet in the back of your throat.
lloyd stanley gordon's insight:

Another  new  post  in the  slipstream  of  new  information  that you  ought  to  take  time out to look  at.

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Malaria in 3-D - Harvard Gazette

Malaria in 3-D - Harvard Gazette | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Harvard Gazette
Malaria in 3-D
Harvard Gazette
The hope, Wilson said, is that the research might illuminate how other, similarly constructed cells — such as cilia inside the lungs — are able to move.
lloyd stanley gordon's insight:

This  bit  of advanced  research  could  add  immeasurably  to  our  understanding of  how  the  cilia  operate and  hence  enhance  our  efforts  at  prserving  them  in the  face  of  the  potential  for  damage during surgical  interventions  and  other  invasive  treatments.

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Juicing as Medicinal Alternative: Can It Save You Money and a Doctor's Visit? - MainStreet

Juicing as Medicinal Alternative: Can It Save You Money and a Doctor's Visit? - MainStreet | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Juicing as Medicinal Alternative: Can It Save You Money and a Doctor's Visit?
MainStreet
I won't continue with the details, but I'm sure most people can agree that during this time, eating is not our favorite thing to do.
lloyd stanley gordon's insight:

This  is  most  definitely  a  high  powered  post offering  tremendous  insights into  prevetative  and curative  Naturopathic healthcare. One  of  the  members  of  the  British Jamaican Association of  Integrative Medicine succeeded  in  curing himself of  Cancer after  medical  doctors  had  yielded  over  his  case to his  own  care  as  he  became  disenchanted  with  standard  medical interventions.

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Association between Obesity, Serum Lipids, and Colorectal Polyps ...

Association between Obesity, Serum Lipids, and Colorectal Polyps ... | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Colorectal cancer mostly arises from the polyps of colon. The aim of our study was to examine the association of body mass index (BMI) and serum lipids with the colorectal polyps in old Chinese people.
lloyd stanley gordon's insight:

Not  many prople  are  aware  of  this so  it  is  a  post  to  be  sought  after  by  those at risk.

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Kids and Snot...Drug-Free Cold Relief - ChicagoNow (blog)

Kids and Snot...Drug-Free Cold Relief - ChicagoNow (blog) | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Kids and Snot...Drug-Free Cold Relief
ChicagoNow (blog)
I used the Simply Saline Baby Nasal Relief to provide a soothing, gentle mist to help loosen up the nasal passages.
lloyd stanley gordon's insight:

Help  your  infants  with  this  suggestion  for  'snot'  removal.

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First fully 2-D field effect transistors: 2-D transistors promise a faster electronics future

First fully 2-D field effect transistors: 2-D transistors promise a faster electronics future | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Researchers have unveiled the world's first fully two-dimensional field-effect transistor, using new device architecture that provides high electron mobility even under high voltages and scaled to a monolayer in thickness.

Via Ioannis
lloyd stanley gordon's insight:

This  would  appear  to  relate  directly  to the  domain  indicated  in  the  URL  to  this  page,  but  there  could  be  applications  for  in  in  research  to  dampen  the  effects  of  rhinisinusitis,  and  haemorrhoids.Should  any  of  my  visitors  come  up  with  any  bright ideas, please do  not  hesitate  to  email  me  at  qoinstresearch@gmail.com.

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Scientists Prove DNA Can Be Reprogrammed by Words and Frequencies

Scientists Prove DNA Can Be Reprogrammed by Words and Frequencies | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it

is "The human DNA is a biological internet and superior in many aspects to the artificial one. Russian scientific research directly or indirectly explains phenomena such as clairvoyance, intuition, spontaneous and remote acts of healing, self healing, affirmation techniques, unusual light/auras around people (namely spiritual masters), mind’s influence on weather patterns and much more..." --IntegrativeNutrition.com


Via Olgy Gary
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A fascinating topic in the new genetics! Th

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Chronic Sinusitis Remedy

Chronic Sinusitis Remedy | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Homeopathic treatment for chronic sinusitis (Prevent your Chronic Sinusitis from becoming Post Nasal Drip.
lloyd stanley gordon's insight:

Quantum  Organiculture  Institute  likes  Homepathic  and  Naturopathic  remedies  and  therefore  recommends  looking  into  the  effectiveness  of  this  product  for  sinusitis  sufferers

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Neurogrid Circuit Mimics Human Brain - Discovery News

Neurogrid Circuit Mimics Human Brain - Discovery News | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Neurogrid Circuit Mimics Human Brain
Discovery News
"Invisible Coral Flows" (above) reveal the hidden flow generated by small hairs (cilia) covering the surface of the coral, between two coral polyps that are 3 millimeters apart.
lloyd stanley gordon's insight:

A  little  off  the  beaten track  for  rhinisinusitis  but  of  relevance  nonetheless  in  relation  to  activities  of  the  cillia. A  topic  for  the  Techie  visitor.

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Get Rewarded | ChatAbout

Earn points and be rewarded for simply chatting about what interests you. (http://t.co/lbdoxt8slG - How do i get rid of post nasal drip?
lloyd stanley gordon's insight:

Quite  a  nice  idea!  Wie  schade!  Such  a  pity  that  it  is  not  available  in Jamaica. My  followers  overseas  ought  to  benefit from this.

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SHOP.COM - Isotonix OPC-3®

SHOP.COM - Isotonix OPC-3® | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Isotonix OPC-3® is an isotonic-capable food supplement that is made from a combination of bilberry, grape seed, red wine and pine bark extracts, and citrus extract bioflavonoids, all found to be powerful anti...
lloyd stanley gordon's insight:

This is  a  scintillating  fruit  juice  combination.  A  perfect  antioxidant  blend.  I  would  love  to  sample  this  with  a  view  to  offering it  at  my Practice  at the  J  & S  Medical  Centre, in Kingston,  Jamaica. My  early  research  back in  the  early  90s  was  about  OPCs.  It  would  be  perfect  for  my  ANTIOXIDANT THEOREM proving  which I  first published in Jamaica  during 1997  at  a  Diabetes  Conference  in Ocho  Rios. I  pray  that I  sample  this  before  the  next conference  in  March  2015.

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Speed-of-light 'nano-camera' produces 3D translucent objects

Speed-of-light 'nano-camera' produces 3D translucent objects | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
A $500 'nano-camera' that can operate at the speed of light has been developed by researchers in the MIT Media Lab.

Via Ioannis
lloyd stanley gordon's insight:

This  miraculour  equipment  could enable  scintillating  advancements  to  be  made in the  filed  of  Naturopathic  Medicine. The  Domain of Ear, Nose,  and  Throat medicine  should  not  have  long  to  wait  before  the  new camera  is  available  to  be  deployed  in  high  sped  experimentation. Well  done  MIT  laboratory  researchers.``

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State seeing increase in whooping cough - Zanesville Times Recorder

State seeing increase in whooping cough - Zanesville Times Recorder | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
State seeing increase in whooping cough Zanesville Times Recorder The bacteria attach to the cilia — tiny, hair-like extensions — that line part of the upper respiratory system and release toxins, which damage the cilia and cause swelling,...
lloyd stanley gordon's insight:

This  insight  into  the  nature  of  Whooping  Cough  is  worth  examining. Given  the nearing,  or  at,  Apocalyptic  crisis  level of  existence  that  we  are  now  facing,  many  infectious  disorders  that  were  largely  stamped  out  could  begin  to  make  a  sudden  appearance.  A  better  understanding  of  the  nature and  causes  of thses illnesses  could  help  to  safeguard our highly  vulnerable  Terran  Humanity  as  our  sacred  planet  Terra  transitions.

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Breathing BioMetal Regulates Building Temperature - A Moonshot Project - ENGINEERING.com

Breathing BioMetal Regulates Building Temperature - A Moonshot Project - ENGINEERING.com | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
ENGINEERING.com
Breathing BioMetal Regulates Building Temperature - A Moonshot Project
ENGINEERING.com
Another project in the research phase is intended to move back and forth in waves like cilia or eyelashes.
lloyd stanley gordon's insight:

This  new  development  should  be  good news  for  persons  susceptible  to the  ill  effects  of  'sick  buildings'  particularly  where  these  may  be  traceable  to  noxious  atmospherics  within  the  building.Use  of  this  technology  to  enhance  air  flow  and  quality  in terms  of  increased oxygenation  and  removal of  carbon  dioxide,  could  be  coupled  with  the  use  of  plants  selected  for  purification  of  the  air.

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Cornerstone Physical Therapy: Proper balance key to fall prevention - Suburban News

Cornerstone Physical Therapy: Proper balance key to fall prevention - Suburban News | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
Cornerstone Physical Therapy: Proper balance key to fall prevention
Suburban News
Within our inner ear, there are structures known as the semicircular canals where there is fluid and crystals attached to cilia, or little hair like projections.
lloyd stanley gordon's insight:

Chronic Rhinosinusitis  could  be  implicated  in  health  challenges due  to  dizziness,  possibly  as  a  result  of  the  seepage  of  infection  into the  inner ear. This  post  is, therefore,  well  worth  noting  in this  context  and  in particular  if  you  have  experienced  spells  of  dizziness  in the  past.

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The inheritance of the primary cilium and the soul of the cell - Phys.org

The inheritance of the primary cilium and the soul of the cell - Phys.org | RHINOSINUSITIS & HAEMORRHOIDS | Scoop.it
(Phys.org) —The primary cilium plays the role of conductor, and antenna, to many kinds of cells. In photoreceptors, the cilium has been morphed into an expansive pigment-infused photon sieve, while in olfactory cells it is ...
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This  is  a  truly  fascinating subject  for  those  seeking  a  deeper  understanding  of  the  nature  and  inheritance  of  the Cilium. This  is  a  classic  study  of its  kind  for  the  Life Sciences  aspects  of  Continuing Studies  in  the  foundations of  Medicine.

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AACI | Abstract | The utility of using fiberoptic rhinoscopy in the ...

Symtomatology of nasal polyps (NP) is relatively non-specific and other nasal conditions that cause nasal may be mistaken for NP. The purpose of this study was to evaluate the accuracy otoscopic (OT) examination in ...
lloyd stanley gordon's insight:

Otoscopic examination  is  one  avenue  to  proceed  alon  to  determine  the  presence  of  Nasal  Polyps (NP) but , of  a  truth,  it  is  lacking in  specificity  and  the  new  Fiber Optic Rhinoscopy offers  tremendous  possibilities  for  improvement  in  clinical  diagnossis  and  hence  swifter  treatment  which  can  be  fine  tuned to  a  greater degree  of  appropriateness  and  hence  accuracy. I  have  witnesed  surgical  proceedures  in progress for  the  removal  of polyps at  the  clinic  of  Dr  Andre  Sultan  who  mentored  me in  Oto- Laryngology during  my  sojourn in  Paris. It  is  quite  a  painstaking  process  and it  is  very  important  for the  surgeon to  be  reasonably  certain of  the  basis  for  believing  that  polyps are  present and  of  the  need  for  their removal.I  was in  Paris  as  a  French  Government Scholar  and  candidate  for  the  doctorate of  the  Ecole  Pratique  des  Hates  Etudes  in  Botanical  Taxonomy, and  more  specifically  with  the  possibility  for  transfer  to  Medicine/Medical  Physiology  and  Psychiatry.  I  will  be  encouraging my  clinical  medical  partner, Dr  Halda  Shaw,  founding  physician of  the  Eatern  Caribbean  Physician's  Group,  and the new Oto Laryngology Association  in Jamaica  to  look  into  the  benefits  of  incorporating this  new modality  into  his  Practice.

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