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Welcome!

Welcome to the website for the PNH (Paroxysmal Nocturnal Hemoglobinuria) support group. Although there is an abundance of resources on this site, our aim is not to inundate the reader with medical information, but to provide support and to share the personal experiences of the members who are afflicted with, or care about someone with this condition.

We are not medical specialists, but due to the rarity of the disease, the combined knowledge of our 400+ members is a huge benefit to all who join our group. If you have recently been diagnosed with PNH, or know someone who has, this group is a wonderful source of information.

Our members area has lots of information available and there is no need to register for an account if you don't want to. Feel free to read the Frequently Asked Questions, check out the medical terms in the Glossary, or access medical articles in the Files section. There is also an abundance of Web Links to other sites with information about PNH.

Frequently
Asked
Questions

Glossary of
PNH Terms
 

PNH
Files
 

Website
Links
 

 
   

News Feeds

Channel: News4Sites - Hematology
Blood Testing, Mosquito Style
Sciencedaily.com - Sat Apr 25, 07:30 pm GMT
Defense says new blood test clears Texas man
Ksla.com - Sat Apr 25, 06:15 pm GMT
Health Tip: Blood Tests During Pregnancy
Wave3.com - Thu Apr 23, 02:12 pm GMT
Blood test 'would've saved Bethany's life'
Metro.co.uk - Wed Apr 22, 02:19 pm GMT
Urology clinic jammed with patients seeking blood tests
Siouxcityjournal.com - Fri Apr 17, 07:20 pm GMT
Businessman Exposed Problems With Quest Subsidiary's Blood Test Kits; Led to $302 Million Settlement
Biz.yahoo.com - Wed Apr 15, 06:20 pm GMT
Sun Sentinel Watch: Insurer's mistake results in big bill for blood tests
Sun-sentinel.com - Tue Apr 14, 06:57 pm GMT
Blood Tests Reveal Tobacco Smoke Residues In Non-smoking New Yorkers
Sciencedaily.com - Thu Apr 9, 06:58 pm GMT
Farrah Fawcett suffering from Hematoma; Wants fans to hold on to hope
Ksla.com - Mon Apr 6, 06:57 pm GMT
Lawyers challenge DWI blood testing
Statesman.com - Sun Apr 5, 04:59 pm GMT
Channel: BloodMed.com News
Genetic debate rages around clopidogrel
The anti-clotting treatment ticagrelor is better than the standard drug at treating heart attacks - and may not need genetic testing, according to the results of a major European study.
Should blood transfusions need specific consent?
Patients receiving blood transfusions may need a detailed explanation of the risks they face, experts have warned.
Improving therapy for elderly patients with multiple myeloma
Researchers have discovered that a less intensive treatment approach can be effective for elderly patients with multiple myeloma.
Ovary preservation may trigger leukemia relapse
Scientists have found that a method of preserving fertility in women with acute lymphoblastic leukemia may be unsafe.
'Resting' blood stem cells at raised leukemia risk
Researchers have discovered that blood stem cells in their resting state are more vulnerable to cancerous changes following DNA damage.
Inexpensive drug could cut deaths from injury
Researchers have found beneficial outcomes from a drug that helps stop blood loss following injury.
Weigh patient before heparin - advice
Clinicians need to ensure a patient has been weighed before giving medication for blood clots, according to an urgent safety warning by UK medical authorities.
Rare childhood leukemia under the spotlight
Experts have reported progress in the search for causes of juvenile myelomonocytic leukemia.
Immune suppressing drugs linked to childhood lymphoma
Fears have been voiced of an increased risk of cancer among children taking drugs called tumor necrosis factor alpha blockers.
Race issues in sickle cell disease highlighted
Race issues continue to affect the care given to patients with sickle cell disease, a specialist has warned - speaking from experience.
Channel: msnbc.com: Health
E. coli outbreak puts focus on meat oversight
The first outbreak linked to a rare strain of E. coli in ground beef is prompting a fresh look at tougher regulations to protect the nation's meat supply.
Drugmakers script social media to push meds

Tom Abrams, director of the U.S. Food and Drug Administration's Division of Drug Marketing, Advertising, and Communications, talks with co-workers Sheetal Patel (left) and Ernest Voyard (second left) about the FDA's enforcement of rules against deceptive pharmaceuticals advertising at FDA headquarters in Silver Spring, Md.It wasn't what you would call a casual get-together.  A popular New York blogger attended a brunch with fellow "frazzled moms." They took in tips from a style expert and listened to a nurse extol the virtues of Mirena, a birth control device sold by Bayer Healthcare.  The nurse was on Bayer's payroll.


7 natural strategies to detox your body

Organic farmer Luis Miranda places summer squash out for sale July 7 at a farmer's market in Sacramento, Calif. You can't avoid all environmental toxins, but you can make it easier for your body to cleanse them.


Your hair knows when you're going to keel over

So stressed out you feel like pulling out your hair?  Save a few strands for the doctor. It could end up saving your life.So stressed out you feel like pulling out your hair?  Save a few strands for the doctor. It could end up saving your life.


Hit 'Hoarders' returns for third season

Gordon and his wife live in a home with no running water, and his wife was once trapped in a trash pile and needed help to get out.Show is A&E's most popular series among young viewers, something of a surprise given that it's about emotionally ill people living amid mounds of garbage.


Antidepressant patch doesn't help smokers quit
NEW YORK (Reuters Health) - An antidepressant drug delivered through a patch on the skin is no better than placebo for helping smokers kick the habit, new research shows.
LA sheriff says almost all pot clinics criminal
The Los Angeles County sheriff has escalated his war of words against California medical marijuana dispensaries, saying as many as 97 percent operate as criminal enterprises.
Ex-egg farm workers say complaints ignored

Robert Arnold looks on as his wife, Deanna, holds a rooster on their farm, Thursday, in Garrison, Iowa. The couple, former workers at Wright County Egg facilities, say they reported problems such as leaking manure and dead chickens to USDA employees, but were ignored. U.S. Agriculture Department employees worked full-time at two Iowa egg farms at the center of a salmonella outbreak, but two former workers said they ignored complaints about conditions at one site.


1 in 7 home kitchens would flunk inspection

Would you pay to eat here?A new study suggests that at least one in seven home kitchens would flunk the kind of health inspection commonly administered to restaurants.


Biotech salmon safe for eating: FDA
A biotechnology company's genetically engineered salmon are as safe to eat as other Atlantic salmon, U.S. regulators said as they weighed approval of the first DNA-altered animal for Americans' dinner plates.
Channel: Medscape Hematology-Oncology Headlines
About Face: Oral Bisphosphonates Linked to Esophageal Cancer
As a new study reports a link, in direct contrast to a previous recent study, experts emphasize that patients need to be reminded about how to take these drugs.
Medscape Medical News
The USPSTF Mammography Screening Guidelines -- Should Women Play the Odds?
Sandra Fryhofer, MD, provides both her professional and personal opinions on the new mammography screening guidelines -- and she has some concerns.
Medscape Internal Medicine
Cutoff Points in Medicine -- Why Use Them?
If cutoff points are useless in cooking and sports, Andrew Vickers asks, then why use them to treat patients?
Medscape Business of Medicine
Metformin Might Prevent Colorectal, Lung Cancers
The old, cheap diabetes drug metformin is attracting notice as a chemoprevention agent.
Medscape Medical News
Stimulus-Responsive Macromolecules and Nanoparticles for Cancer Drug Delivery
Read about the latest advances in 'smart' - stimulus-responsive - drug carriers, which can improve targeted delivery of cancer drugs to tumors while minimizing harmful effects in healthy tissues
Nanomedicine
Alcohol May Increase Risk for Breast Cancer Recurrence
Drinking 3 or 4 alcoholic beverages a week might increase the risk for recurrence and death in breast cancer patients; the effect is greatest in postmenopausal and overweight/obese women.
Medscape Medical News
New Breast Cancer Imaging Poses Much Greater Radiation Risk Than Mammography
Compared with mammography, new techniques that use radioisotopes increase radiation risk more than 20-fold and should not be used for screening.
Medscape Medical News
Are Oncology Patients -- But Not Docs -- Using Decision Aids?
Decision aids are used by a minority of physicians who treat cancer patients. Are doctors lagging behind patients in the use of these tools?
Medscape Medical News
Surgeon Grows Into a Leader in Louisiana, ASCO, and Beyond
Quyen Chu, MD, is a man with a mission or, more specifically, many missions.
Medscape Medical News
Palliative Care Integrated With Chemotherapy Improves Survival in NSCLC
Dr. Kathy Miller praises a study indicating patients with metastatic NSCLC who receive early palliative care live longer and have better quality of life than those receiving regular therapy.
Medscape Hematology-Oncology

 

  
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