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Thu, Jul. 5th, 2012, 05:25 pm
kid_lit_fan: $100 for only 45 minutes

I hope that this posting meets the community standards. There are no sales nor promotion involved in the research.

I work for Plaza Research, a national market research and medical research company. We are currently recruiting for a study about Hemophilia. We are seeking adults with Hemophilia A to participate in a study in our offices in downtown San Francisco (convenient to BART, Muni and low-cost parking.).

The study itself will take place in person in downtown San Francisco. We have various times available, on weekdays from July 24-July 31st.

There is a brief telephone screening to make sure that you do qualify (a few questions regarding when you were diagnosed and your treatment regiment).
The study pays $100 for a 45 minute interview.

To see if you qualify, or if you have questions, please call 415 984 0400 and ask for Beth.

Thank you

Tue, Oct. 20th, 2009, 08:25 pm
heptagon69: in treatment for hepatitis c

hello! new member here (but longtime LJ user), just starting treatment for chronic hep c. looking to friend others who are going through, or have gone through, or are thinking about going through treatment! :)

user info here

Thu, Aug. 20th, 2009, 07:14 pm
banignorance: help? please?

Hi.. I'm Nicole 23 year old. I have Endometriosis, Hypothyroidism, and ITP. I'm here right now about my ITP. My doctor called and said they want to start me on Rituxan tomorrow for my ITP because I've already done two doses of Dexametha -something (steroid) - 10mg for 4 days- twice now and my platelets keep dropping anyway. Ive been off of the steroids for weeks now and they seem to keep dropping anyway. So this is what they've come to.. Rituxan. has anyone else had this done? I called the doctor and wrote down the name today so I could find out more about it.. and I'm not liking what I'm reading. 77% of people have these side effects and 3% die.. im sure you guys are all in the same boat with me when I said I'm ALWAYS the one who gets sick or has the side effects. always! Should I go through with this or not? because now im worried

http://www.pdsa.org/itp-treatments/rituxan.html


re-posted

Thu, Aug. 13th, 2009, 05:59 pm
kkleigha87: hi

Hi. I am happy that this community exists! My daughter has a bleeding disorder call von willebrand factor deficiany type 3. Type 3 is the most severe type. Basically, when she gets cut or scratched, she does not stop bleeding. She also bruises extremely easy and has a high high risk of internal bleeding after a small fall or injury. She is only 10 months old and she has not had to have an infusion thus far so hopefully I can keep her from getting injured. Although, it seems to be more of a challenge now that she is trying to walk : (  My son is 2 and he was tested to see if he also has it. He has von willebrand factor deficiany type 1, which isn't as serious, but still! Both of my children!? Has any body in this community ever had experience with this kind of bleeding disorder? If so, were there any support groups that you attended? I don't want my daughter to feel like the odd one out when she gets older and i would like to get involved with other parents who have kids with the same thing. Any help would be greatly appreciated! Thanks!  

Thu, Apr. 2nd, 2009, 05:22 pm
evilbeef: (no subject)

I can already tell this is going to be a long hemophilia related rant. So excuse me for being all scatter brained. I'm sure I'll jump through a lot of topics.

I'm new to this community, but not new to the hemophilia community. My father has it and my step mom is an advocate for women with bleeding disorders, she her self also has one.

I am 20 and currently pregnant with my first child. Its a boy! Which is why I have joined this community. I myself have pretty regular periods and am on the low end of normal for all my test counts and what not. But my dad is still convinced that I have a good chance of bleeding to death during labor. Pft, I'm much more worried about my little boy bleeding to death while I'm in labor.

I have some questions:

Are there any mothers of hemophiliacs on this comm?
Are there any hemophiliacs that would like to share the story of how they were born?
Are there any that are here in texas?

The thing that scares me the most is that i wont get the insurance and have the money to care for him if he is a hemophiliac. I heard the dallas treatment ceneter is awful. I was also wondering if any one knows of a state with a good treatment center. Or of a web site stating the ratings of treatment centers.

Also,
I would like to know if any are from Arizona, and how their treatment centers are.


also, i am very scared of the risk of my child getting hep c and what not from factor or a transfusion. my step moms son is like 20something and he got it. What are the odds today?

Thanks,

Tue, Sep. 16th, 2008, 10:55 am
kiki_da_vamp: Hep C?

I was given my medical records to bring to my midwife (changing hospitals for my delivery 23 wks pregnant) and in two seperate place one in handwriting, one typed, says I got Hep C at 16.

No one has ever told me this, is this something they should have told us?

When I was >4 we lived with my uncle, (he has Hep C due to his drug usage) , my pedi had asked my mom if anyone in the house had it and she said yes and explained. She assumed they tested me then, but maybe they didnt actually test me til I was 16? But still, no one ever told me or my mother, and I am on my third pregnancy, and I had an appendectomy three years ago.

Im worried cause I have no idea about Hep C at all, the internet is fuly of scary information, Im worried that I have passed it onto my kids, why did no one tell me? Why wasnt I treated? *aaaahhh*

Sat, Jan. 12th, 2008, 05:21 pm
williamleevi: hello all.

 Hey, I'm Will. I just discovered this community.

25, with Essential Thrombocythemia displaying symptoms. Trying to find a way to avoid the nasty medication that the doctors want to put me on. I'm seeing a naturapath too. 

I'm a little nervous since a couple of months ago, I had a TIA. 

Trying to decide if I should just take the medication. (Hydroxyurea)

So that's my bit.

Anyone else here living with myeloproliferative disorders? How're you feeling about your meds? Anyone have any success with alternative medicines/therapies?

Wed, Oct. 24th, 2007, 10:53 pm
foolish_mouse: help.

Hi, my name is Rinn and i think i might have been exposed to hep c. I had contact with a guy i know and i just heard from someone that he is positive. i am going in for bloodwork this week and im scared to death. from reading these posts i now know that there is a cure. the reason i'm scared is because i have a wonderful boyfriend who is now at risk. im completely crushed and scared to death because if i am positive that means i have to explain this to my boyfriend. i really need to talk to someone...so please comment or talk to me on aim. retrorinn i need some support...bad. the man who is suposedly positive drugged me and from what i remember we had oral contact...there's less risk for that right?

Fri, Oct. 12th, 2007, 03:19 am
nevinai: A question about contracting hepatitis c.

I've read alot of FAQs on hep-c to learn about the risks and ways of contracting the disease ... there's been some mention of the possibility of contracting it through sharing a straw when 'snorting' drugs, and there were vague mentions of mucus being involved in the transmission. It hasn't been mentioned if hep c can be transmitted if infected blood is ingested or comes in contact with your mouth ... but I know alot of things can be absorbed through ones oral mucosa. Does anyone know if its possible to contract the disease that way ?

Mon, Oct. 1st, 2007, 11:19 pm
the_radish: Canadian Hemophilia Society Surprised and Disappointed at Tainted Blood Verdict

MONTREAL, QUEBEC--(Marketwire - Oct. 1, 2007) - The Canadian Hemophilia Society (CHS) is surprised and disappointed that the trial in the Ontario Superior Court of Justice against one company and four individuals involved in the manufacture, licensing and distribution of Armour's H.T. Factorate has not resulted in any convictions.

"This has been a 20-year struggle for the Canadian Hemophilia Society on behalf of our members," said Pam Wilton, CHS President. "We have fought for a safer blood system, for a public inquiry, for compensation and for a criminal investigation. Our objective has been to ensure that nothing similar happens in the future. This verdict sends the wrong message to those responsible for the health of the public: serious errors can be made in the manufacture, licensing and distribution of essential drugs; these errors can lead to disability and death, yet companies and individuals will not be held accountable."

The events in question relate to the HIV infection of a group of Canadians with hemophilia in 1986 and 1987. This was a time when people with hemophilia and their physicians were led to believe that clotting factor concentrates used to stop bleeding in hemophilia had been made safe from HIV through heat treatment. The terrible times of the early 1980s when HIV invaded the blood system were thought to be over. Tragically, they weren't.

Chapter 16, Safety in Heat-Treated Concentrates, of the Final Report of the Commission of Inquiry on the Blood System in Canada (the Krever Commission) eloquently chronicles how serious concerns over Armour's heat treatment process in 1986 and 1987 failed to result in precautions to protect patients. Armour made no changes to the manufacturing process; Health Canada ordered no recall; the Canadian Red Cross suspended no contracts. Patients and physicians were not warned. A subsequent 5-year investigation by the RCMP led to these criminal charges in 2005 against Armour Pharmaceutical, Dr. Michael Rodell of Armour, Drs. John Furesz and Wark Boucher of Health Canada's Bureau of Biologics, and Dr. Roger Perrault of the Canadian Red Cross.

A separate criminal trial will begin in October in the Ontario Superior Court in which Dr. Roger Perrault is accused. The charges relate to the failure to adequately screen the blood supply and take further safety measures to protect against HIV and hepatitis C in the 1980s.

At least 1,100 Canadians were infected by HIV, including 700 people with hemophilia, almost all of them before mid-1985. More than two-thirds have died. An estimated 20,000 more were infected with hepatitis C through blood and blood products; the exact number of deaths is unknown but likely surpasses 1,000.

Profile of the CHS

The Canadian Hemophilia Society (CHS) is a national voluntary health charity. Our Mission is to strive to improve the health and quality of life for all people with inherited bleeding disorders, and to find a cure. Our Vision is a world free from the pain and suffering of inherited bleeding disorders.

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