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Fri, Aug. 3rd, 2007, 10:11 pm
juno_februa: AV Fistula

Has anyone out there with a bleeding disorder had an arterio-venous fistula done to improve vascular access?

Sat, Feb. 10th, 2007, 04:15 pm
resident_raptor: New Group

Hey there.

New group for folks with anemia. Just starting out so please join.


Sat, Feb. 3rd, 2007, 06:03 pm
dizzle09: FDA Approves New Product to Treat Von Willebrand Disease

The U.S. Food and Drug Administration (FDA) today announced the approval of Antihemophilic Factor/von Willebrand Factor Complex (Human), Alphanate. The product is approved for patients undergoing surgery or invasive procedures with von Willebrand disease (vWD) in whom the hormone desmopressin is either ineffective or contraindicated. It is not approved for patients with severe vWD (Type 3) who are undergoing major surgery. The disease is the most common inherited bleeding disorder, affecting about one percent of the U.S. population.

Alphanate is the first biologic product approved for treatment of surgical and invasive procedures in patients with vWD. Alphanate is already approved for the prevention and control of bleeding in patients with Factor VIII deficiency due to hemophilia A or acquired Factor VIII deficiency.

"This approval is an important advance for patients and their surgeons, providing them access to a proven preventive therapy that can make needed surgery possible and safer," said Jesse L. Goodman, M.D., MPH, director of FDA's Center for Biologics Evaluation and Research.

Men and women are equally affected by vWD, which is caused by a deficiency or defect in certain plasma proteins critical to blood clotting. In most affected people, the disease is mild, and treatment usually is not required to stop bleeding. However, about 2,000 people in the U.S. each year suffer from moderate and severe forms of the disease in which bleeding can be excessive if not treated.

Successful management of surgery or invasive procedures in mildly, moderately and severely affected individuals routinely requires correction of the bleeding defect. In the absence of correction of the bleeding defect, patients may suffer from prolonged bleeding and delayed wound healing.

Alphanate is purified from pooled human plasma from carefully screened and tested U.S. donors, and contains the clotting proteins deficient or defective in vWD, which are Factor VIII (also know as Antihemophilic factor) and von Willebrand factor. Alphanate undergoes two separate steps for viral inactivation to reduce the risk for transfusion-transmitted viruses. However, the potential risk for the transmission of blood-borne viruses, and theoretically variant CJD, while very low, cannot be totally eliminated.

In clinical studies with Alphanate, 120 major, moderate and minor surgical procedures were performed in 76 patients. Based on predefined criteria for efficacy, more than 90 percent of patients had favorable outcomes. In these clinical studies, 15.8 percent of subjects and 5.7 percent of infusions were accompanied by adverse reactions, most commonly itching, pharyngitis, paresthesia (a sensation of numbness and tingling on the skin) and headache, swelling of the face, and rash and chills.

Alphanate is manufactured by Grifols Biologicals, Inc., Los Angeles, Calif.

Source: http://www.fda.gov/bbs/topics/NEWS/2007/NEW01553.html

Sat, Dec. 30th, 2006, 09:09 pm
hystericalrealm: HCV and more

Hi all. My name is Tess and I'm 22. Just a few days ago, I was told that my third annual STD blood tests came back Hep C positive (the qualitative/antibodies test if I understand this right). My gyno (who recently added HCV to her testing) referred me to get more extensive testing (the quantitative one I believe) to see where the disease is. My appointment with my GP is next week.

This news is completely crushing for me, as another health problem is the polar opposite of what I need right now. The past three months I have been recovering well from a surgery to cure Conn's Syndrome (caused by a tumorous, cyst-producing, hemmoraging left adrenal gland, which is now gone). In addition, I have two autoimmune diseases that have developed over the past 5 or 6 years - Hashimoto's Thyroiditis and lichen planus (in my gums). I was tired of these problems already... now there's more on my plate.

Previous to this week's news, I had been trying to figure out a connection between my various medical conditions. I see an endocrinologist, and she has been great in helping me get my thyroid back on track and she helped me find a surgeon who was willing to remove my adrenal gland. But neither she nor my other doctors have ever sought to put what I'm convinced is a puzzle together. Has anyone here had autoimmune problems with their HCV? Is anyone familiar with evidence supporting these ideas?

In addition, I have been trying to deal with the feelings of anger I have been experiencing - toward myself for putting loved ones at risk because I didn't know and toward the universe. I also feel ashamed, and I don't want many people to know. I know that sharing health issues is a very personal decision, but any advice on breaking news such as "I have HCV" would be appreciated. I am also terrified of future relationships, as I don't want to break news to someone that I have something they could catch potentially.

Wed, Nov. 29th, 2006, 07:30 pm
the_radish: (no subject)

Medical Advisory #406: FDA Confirms Low Risk for Creutzfeldt-Jakob Disease Among Persons Using Plasma-Derived Factor VIII Products Licensed in the US

On Monday, November 27th, the Food and Drug Administration (FDA) released documents relating to the Agency’s assessment of the risk of acquiring variant Creutzfeld-Jakob Disease (vCJD), a human form of “Mad Cow Disease, for persons with bleeding disorders who have used US licensed plasma-derived factor VIII products (pdFVIII).  Although there are still too many uncertainties to allow the Agency to make a precise calculation of theoretical risk without further study of this issue, FDA officials and other experts continue to believe that this risk is exceedingly low but possibly not zero. It is important to note that there have been no known cases of vCJD in users of pdFVIII products worldwide, including in the United Kingdom where the prevalence of vCJD in the general population is the highest in the world.

On December 15, the agency will convene a panel of consumers, medical professionals and other experts to advise them on how best to broadly communicate this information to the public. NHF will participate on the panel, and will continue to work closely with the FDA and other government agencies to ensure that the community receives complete, accurate and timely information on this subject.

PHYSICIANS: Please distribute this information to all providers in your area who treat patients with hemophilia. The CDC will convene a call for HTC Directors on Friday – more information to follow.

CHAPTERS: Please distribute this information to your membership.

Please sign up for the Patient Notification System (PNS) to be notified directly about the latest recall or withdrawal of recombinant and plasma products. The System is confidential and time sensitive. It is administered by an independent third-party organization and is free of charge.

To enroll in the PNS, please go online at http://www.patientnotificationsystem.org

This material is provided for your general information only.  NHF does not give medical advice or engage in the practice of medicine.  NHF under no circumstances recommends treatment for specific individuals and in all cases recommend that you consult your physician or local hemophilia treatment center before pursuing any course of treatment.


Visit the web address below to tell your friends about this.

If you received this message from a friend, you can sign up for NHF eNews.


Tue, Nov. 14th, 2006, 02:33 am
imarcin: Sexual transmission of Hep C in blood disorder sufferers

When I was young, I was exposed to Hep C due to the Canadian Red Cross tainted blood issue.

I've always wondered how transmissable the Hep C is to a sexual partner. I've heard differing opinions from my doctors ranging from 'we really don't know' to 'one of our patients is married with children and hasn't passed it on.'

I'm not entirely sure how infectious I would be anyway as I test postive for the Hep C antibody but not for the virus.


Tue, Nov. 14th, 2006, 12:44 am
ruh_chelle: Hepititis C Treatment

Hi Everyone,
I'm new to LJ, and am looking for people that are going though the same crap i am...
I was told i had Hep C when i was 15, and am now being treated for it. I decided to start treatment 2 months ago to prevent the Hep. from getting any worse. I don't have it to bad... but taking this medication really sucks. The doctor said i have a 70% chance of being cured, and it should only take about 6 months. That was until we found out i had genotype 1 (of course, had to be the hardest to cure).
So far the Pegasys and Copegasys treatment hasnt been as bad as i expected, but i feel like i might be experiencing more side effects as the weeks go on, "emotional issues" and anemia being my main concerns.

Hopefully someone out there is going though what i'm going though and is willing to talk about it with me.


Thu, Oct. 19th, 2006, 03:55 am
starrysky07: ear piercing and ITP

Hi everyone! I have ITP and have been diagnosed for five and a half years. I really want to pierce the cartilage of one of my ears, but I'm not sure how this would go over with my ITP. I know that my friends had bruises for awhile, but they didn't bleed. My ear lobes are pierced, but they were pierced about 5 years before I was diagnosed. Any thoughts?

x-posted to autoimmune

Sat, Sep. 30th, 2006, 01:25 pm
dizzle09: gene therapy cures VWD in mice

Gene therapy corrects von Willebrand disease in mice
Researchers at the Weill Medical College of Cornell University in New York have reported in the August 1, 2006, issue of Blood about their work with mice with von Willebrand disease, a hereditary bleeding disorder. The researchers used gene therapy to give the mice the ability to make the clotting substance (von Willebrand factor) missing in the disease. The gene-treated mice had normal blood clotting. This suggests that gene therapy might be a way of treating or correcting von Willebrand disease.

Click for the article's abstractCollapse )

Source: http://rarediseases.about.com/b/a/257533.htm

Sun, Apr. 23rd, 2006, 05:35 pm
juno_februa: Tainted blood victims allege official cover-up

Tainted blood victims allege official cover-up

Letters reveal that senior civil servants destroyed crucial documents

Lorna Martin
Sunday April 23, 2006
The Observer, UK

Survivors of Britain's contaminated blood scandal last night accused the government of a cover-up after doubts emerged about the reasons for the destruction of hundreds of critical documents. Earlier this year victims were told that paperwork had been accidentally destroyed by an inexperienced civil servant. However, letters seen by The Observer reveal that only senior officers, who would have known that the 600 sensitive files should have been stored for at least 25 years, would have been in a position to retain or destroy them.
The documents detailed meetings between the blood transfusion service, health boards, government officials and consultants during the Seventies and Eighties and contained critical information about what has become one of the worst disasters in the history of the NHS.

After several victims lodged a freedom of information request earlier this year, they was told they had been erroneously destroyed, some during the early Nineties and the remainder between July 1994 and March 1998. They were the only records relating to NHS policy which were 'inadvertently' destroyed during the Nineties, and contained information on when precisely the government became aware of the risks from imported blood and what measures were taken to warn patients.

In a further development, The Observer has learnt that the shredded documents were the same ones the Tory government had gone to extreme lengths to suppress in 1990. When a judge ruled that they must be released, ministers, in an apparent attempt to avoid handing them over, announced a spectacular U-turn, offering an immediate out-of-court settlement to around 1,200 victims, mainly haemophiliacs, who had contracted HIV from imported blood products.

It is the only time the government has sanctioned 'compensation' without negligence first being proved by a court. Victims were urged, some say coerced, into accepting the money. The cash accepted ranged from £21,000 to £80,000. This compares with a recent case in which a man infected with a variant HIV virus from contaminated blood during surgery was awarded £750,000 after a seven-year court battle with the National Blood Service.

Last week, an Observer investigation found that many of the 400 still alive are living in poverty. Campaigners said the latest revelations added weight to their calls for additional compensation as well as an independent inquiry. 'In other countries they have investigated the disaster properly,' said Lord Morris of Manchester, the former Labour MP who is president of the Haemophilia Society. 'In Canada there has been legal action. In Ireland, victims have been adequately compensated and in France people have been sentenced to imprisonment for their part in the disaster. But here in the UK, the government treats the victims with remarkable arrogance and disregard.'

Until now, officials have always said an inexperienced staff member was probably responsible for the destruction of the files. However, in a letter dated February this year, Health Secretary Patricia Hewitt stated that under the Public Records Act 1958 all departments were required to identify records requiring long-term retention. Such rulings, she said, would be made by a senior member of staff.

A spokeswoman from the Department of Health said that the victims' request for additional financial assistance was still being considered.

· Some of the contaminated blood scandal survivors have been telling their stories on our blog. You can read the blog and post comments here.


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