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Children With Hemophilia Get a Second Chance in Romania


Health & Wellness  (tags: disease, children, ethics, health, illness, medicine, Body-Mind-Spirit, drugs )

JL
- 521 days ago - americares.org
Through its unique and often life changing experiences the program offers children with hemophilia and other serious illnesses the opportunity to feel normal if only for one week.



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JL A. (275)
Tuesday March 26, 2013, 8:41 am
Children with Hemophilia Get a Second Chance in Romania
Camp Ray of Hope, Romania
March 20, 2013

.
Like Cristian, these children get to run and play at Camp Ray of Hope.

Camp Ray of Hope is a project of S.T.A.R. Children Relief. Through its unique and often life changing experiences the program offers children with hemophilia and other serious illnesses the opportunity to feel normal if only for one week.

Cristian arrived at Camp Ray of Hope accompanied by his mother and confined to a wheelchair. His severe hemophilia and lack of access to anti-hemophilia agents had caused his joints to swell, limiting his physical movement. His need for constant medical attention kept even the simplest play and daily freedom of childhood out of reach.

During his time at the Camp, however, access to affordable care through the AmeriCares-supported program and a passionate determination to participate in camp activities transformed Cristian.

Hemophilia is a blood disorder that prevents blood from coagulating due to a missing protein (“a factor coagulant”). Without treatment, Cristian faces ongoing risks to his joints and internal organs. Even a minor external injury, a cut or a bruise, can lead to a serious medical emergency.

About 1,600 people in Romania are affected with hemophilia. No cure exists for the disorder, but it can be managed with doses of the missing blood factor coagulant (typically Factor VIII or Factor IX). Access to these hemophilia therapies is simply not available to many children in impoverished countries like Romania. Once again due to a generous donation of factor coagulants by AmeriCares partner, Baxter International, Camp Ray of Hope was able to give children like Cristian a near–normal life this past summer.

For Cristian, this daily dose of factor coagulant helped his joints grow stronger. His enthusiasm and courage to participate in all camp activities, regardless of his restrictions, were an inspiration to everyone at the camp. Cristian progressed from wheelchair to crutches, and eventually walked on his own in the Camp’s final parade! His remarkable transformation demonstrates the profound importance of Camp Ray of Hope.
A happy camper.
A happy camper.

Adriana Henderson, Founder and President of S.T.A.R. Children Relief, which operates Camp Ray of Hope, sums up the impact of the Camp at the completion of its 7th consecutive summer:

Not only does the camp provide free medical treatment for those affected, but it also safely gives children like Cristian what every child deserves: the freedom to build something, play a game, compete, dance, swim and more—without fear. Without AmeriCares help, there would be no camp for children with hemophilia in Romania.

Camp Ray of Hope is a project of S.T.A.R. Children Relief. Through its unique and often life changing experiences the program offers children with hemophilia and other serious illnesses the opportunity to feel normal if only for one wee
 

Kit B. (276)
Tuesday March 26, 2013, 10:54 am

I just added some information from the CDC, I don't know about others, but I really didn't know much about hemophilia. It sounds like the treatments could be expensive and have side effects.

In the US:

Hemophilia affects 1 in 5,000 male births. About 400 babies are born with hemophilia each year.

The exact number of people living with hemophilia in the United States is not known. A CDC study conducted in six states in 1994 estimated that about 17,000 people had hemophilia at that time. Currently, the number of people with hemophilia in the United States is estimated to be about 20,000, based on expected births and deaths since 1994.

Treatment

A CDC-sponsored randomized clinical trial found that children who were treated on a regular basis to prevent bleeding had less evidence of joint damage by 6 years of age than did those who were treated only after a bleed had started.


About 70% of people with hemophilia in the United States receive multidisciplinary, comprehensive care in a network of federally funded hemophilia treatment centers.


Mortality rates and hospitalization rates for bleeding complications from hemophilia were 40% lower among people who received care in hemophilia treatment centers than among those who did not receive this care.


Complications

Treatment

Some of the products used to treat bleeds in people with hemophilia are made from plasma from donated blood. Manufacturing and viral inactivation steps have made these products very safe. A blood safety surveillance system in place since 1998 has found no new infections with hepatitis or HIV associated with these products among hemophilia patients.
[Read article]

Some people with hemophilia develop an inhibitor (antibody) to the treatment product that makes the product ineffective at stopping a bleeding episode. The incidence rate of this potentially very serious complication is estimated to be about 2.75 cases per 1,000 person years among people with hemophilia who have used treatment products more than 150 times.


Bleeding

A CDC study that examined surveillance data on more than 500 babies with hemophilia found that more than 70% had suffered a bleeding episode before 2 years of age, and one in five of these bleeds involved the head.


People with hemophilia who learn how to treat their bleeds at home are less likely to be admitted to the hospital for a bleeding complication.


Joint Disease

CDC data have shown that in addition to increasing severity of hemophilia, overweight, as measured by body mass index (BMI), is strongly associated with joint mobility limitations.


These same data show that the rates of overweight and obesity among children and adolescents with hemophilia are similar to those among the general population, which are currently at epidemic proportions.

Septic arthritis, also called infectious arthritis, is an infection located in a joint caused by bacteria or, more rarely, by a fungus or virus. The incidence of septic arthritis among people with hemophilia is 15 to 40 times higher than that among the general population. These infections may lead to a faster decline in joint mobility in people with hemophilia.


Heart Disease

People with hemophilia have unique risk factors such as infusion of factor concentrates and infection with HIV that may predispose them to heart disease as their life expectancy increases.


Renal Disease

People with hemophilia have risk factors such as HIV infection, inhibitors, and kidney bleeding that have been associated with acute and chronic renal disease.

http://www.cdc.gov/ncbddd/hemophilia/data.html
 

Lynn D. (0)
Wednesday March 27, 2013, 1:48 am
Wonderful, thanks!
 

Ela V. (84)
Wednesday March 27, 2013, 2:10 am
thank you AmeriCares and JL, gladly noted
 

Cinzia Palamara (64)
Wednesday March 27, 2013, 2:46 am
Noted. Thanks for sharing
 

Fi T. (16)
Wednesday March 27, 2013, 4:16 am
They're our hope and future
 

JL A. (275)
Wednesday March 27, 2013, 7:33 am
You are welcome Lynn, Ela and Cinzia. You cannot currently send a star to Fi because you have done so within the last day.
 

Diana I. (0)
Wednesday March 27, 2013, 11:54 am
Good job!
 

Jude Hand (59)
Wednesday March 27, 2013, 3:28 pm
Noted. Super! Thanks.
 

JL A. (275)
Wednesday March 27, 2013, 3:29 pm
You are welcome Jude. You cannot currently send a star to Jude because you have done so within the last day.
 

Birgit W. (144)
Wednesday March 27, 2013, 4:18 pm
Thank you
 

JL A. (275)
Wednesday March 27, 2013, 4:22 pm
You are welcome Birgit
 

Kerrie G. (135)
Thursday March 28, 2013, 3:40 am
Noted, thanks.
 

paul m. (93)
Thursday March 28, 2013, 7:33 am

Nice one...
 

JL A. (275)
Thursday March 28, 2013, 8:34 am
You are welcome Kerrie. Indeed it is Paul
 
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