Resident Continues Fight For Cooley’s Anemia Cure

November 24, 2010

Courtesy: gcnews.com

At 88 years old, Garden City resident Concetta Paradiso continues to dedicate much time and energy to raising awareness and funds to find a cure for Cooley’s Anemia, a fatal, genetic blood disorder affecting thousands of children.

“People ask me sometimes, ‘Haven’t you had enough?’” Concetta said in a published interview. “Sometimes I’d like to quit, but then I think about it, about how we still don’t have a cure, and I decide to keep on. There are a lot of things going on now in the search for a cure. I hope they find it, and soon.”

Concetta and her late husband Edward had four children: Susan was born in 1949, Peter in 1950, Janice in 1954 and Paul in 1956. Susan and Paul were diagnosed with Cooley’s Anemia during early childhood; after valiant battles, they both ultimately succumbed to the disease, Paul at 17 and Susan at 28 years of age.

Cooley’s Anemia, also known as thalassemia, is the name of a group of genetic blood disorders. Red blood cells consist partially of hemoglobin, which carries oxygen throughout the body. Hemoglobin consists of two different proteins, an alpha and a beta. If the body does not produce enough of either of these two proteins, the red blood cells do not form properly and cannot carry sufficient oxygen. The result is anemia.

Treatment involves blood transfusions every two to three weeks and folate supplements. The disease is fatal because transfusions increase the level of iron in the body. The excess iron collects around organs, including the heart, and ultimately causes them to fail.

The hope for a cure is getting closer each day. Through the years there have been several medical breakthroughs that have made it easier for patients to manage the disease. Many now survive into their 50s.

“The Foundation has research projects that are very promising,” said Janice Cenzoprano, Concetta and Edward’s daughter and member of the local foundation’s executive committee. “They need the funds to continue the research. For the past 40 years, the Garden City community has been generous in donating the funds needed for research, which has added 10 to 15 years onto the lives of children born with Cooley’s Anemia.”

Concetta and Edward joined the national Cooley’s Anemia Foundation in 1956 when Paul was four months old. They became involved in fundraising and organizing blood drives. Concetta served as secretary and Edward became president, a post that Concetta also later assumed.

Eventually, they were two of the primary founders of the local CAF chapter based in Garden City. Concetta continues to raise awareness and funds for research and development. The local chapter hosts four major events a year: a brunch in March, a walkathon and a golf outing in May and a dinner dance in November

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Teen thankful for gift of life

November 24, 2010

Courtesy: mississauga.com

A Mississauga teen who needs frequent blood transfusions to stay alive thanked blood donors personally last week.

Now 14, Olivia Vitelli was just five months old when she had her first blood transfusion after suffering a stroke. At nine months, she was diagnosed with thalassemia and began receiving regular blood transfusions every three to four weeks.

Thalassemia is an inherited blood disorder that results in chronic anemia. There is no known cure.
She’ll likely have to have those transfusions for the rest of her life.
Together with her mom Ida Vitelli, they thanked donors at clinic held Friday at the Canadian Coptic Centre. The clinic was dubbed “In Honour of Olivia.”

“It’s a chance for people to see and talk to someone who really needs blood, and who will chronically need it for the rest of her life. It’s why we’re doing this,” said Ida, who encouraged Mississauga residents to come out and give blood.

“On average, every minute of every day, someone in Canada needs blood,” said Helena Hearn, the community development coordinator at Canadian Blood Services. “We need more donors and we need more youth donors to get engaged and get involved in the blood system. Giving blood is one of the most direct ways you can help someone. So we encourage Mississauga residents to come out and help patients in need — patients like Olivia.”


Exploring Sickle cell disease

September 7, 2010

Courtesy: guardian.co.tt

Did you know that millions of people world-wide suffer from sickle cell disease—an incurable inherited blood disorder that affects red blood cells? Did you know that millions more carry the sickle cell trait (an inherited condition in which both haemoglobin A and S are produced in the red blood cells) but that many are unaware of it? Did you know that when both parents have the trait there is a 25 per cent chance that they will have a baby with sickle cell disease with each pregnancy? Or that if one parent has sickle cell anaemia and the other has the sickle cell trait, there is a 50 per cent chance of having a baby with either sickle cell disease or the sickle cell trait?

Did you also know that if one parent has sickle cell disease and the other doesn’t, all of the children will have sickle cell traits?
These alarming statistics underscore the need for more education and public awareness about this serious health issue. What you don’t know can kill you!

Coping
Mark, (not real name) was born with sickle cell disease. His three siblings were not. Coping with the illness, especially during childhood, has been no easy task. Noting that he would often become bedridden and crippled with severe joint pains, he says, “There were things as a child that I couldn’t do. I couldn’t be active for long periods because I got shortness of breath.” Although the joint pains have lessened, Mark, 42, now struggles with swollen ankles and skin ulcers because of poor circulation. His advice to others? Get tested for the sickle cell trait!

“People are ignorant and think that it can’t run in their family. People hooking up with people who have the trait and having kids, and these kids coming out with the disease.” Noting that the disease has deterred him from starting a family of his own, he says, “I know what I went through and I don’t want to put any child through that.”

Get tested
Local medical doctor, Imran Aziz, says sickle cell disease usually does not appear in an individual until three to six months of age.
Due to improved treatment and care, he says affected persons are now living into their 40’s, or 50’s, or longer. “Long ago it was difficult to find patients living past 25, but now it’s a common trend to see people living longer with the disease.” Aziz says while the Ministry of Health is doing its part to educate the public about the disease, individuals should be more proactive in educating themselves and getting tested for the trait. “It’s extremely important to know,” he stresses.

Daley Hope
Meanwhile, Tyrish Ali, who believes that the majority of the population remains “ignorant” about the disease, has taken up the mantle of spreading the word. Twenty-two-year-old Ali hopes to soon establish Daley Hope—a non-profit organisation dedicated to her late mother, Dale Minguel, who died last year of complications related to sickle cell disease. She was 47. “Recently I found out that two young people died of the disease and it brought back painful memories of my own mother’s death,” she says. “I encourage people to get tested for sickle cell trait and I encourage everyone with sickle cell anaemia to seek and continue getting treatment.”

More info:
People with sickle cell disease have red blood cells that contain mostly haemoglobin S– an abnormal type of haemoglobin. (Normal red blood cells contain haemoglobin A. Haemoglobin S and haemoglobin C are abnormal types of haemoglobin.) Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels. When sickle-shaped cells block small blood vessels, less blood reaches that part of the body, resulting in damaged tissue. Sickle cells are destroyed rapidly in the body, causing anaemia, jaundice, the formation of gallstones, damage to the spleen, kidneys and liver.

The most common types of sickle cell disease are: Sickle Cell Anaemia (SS), Sickle-Haemoglobin C Disease (SC), Sickle Beta-Plus Thalassemia and Sickle Beta-Zero Thalassemia. There’s currently no universal cure for sickle cell disease, which is most common among people whose ancestors come from Africa; Mediterranean countries ; the Arabian Peninsula; India; Spanish-speaking regions in South America, Central America, and parts of the Caribbean. Persons born with only one sickle cell gene carry sickle cell trait. People with the trait are generally healthy.


Baku hosts round table on thalassemia and anemia

August 15, 2010

Courtesy: news.az

Heydar Aliyev Foundation and UNICEF hosted a round table focused on anemia and thalassemia blood disorders at Baku Business Center.

Ilgar Mustafayev, Representative of Heydar Aliyev Foundation, said the Foundation has implemented a wide range of successful projects in the field of health protection for the last 6 years. Thus, highly equipped Thalassemia Center with the latest advances and techniques was built in Azerbaijan as part of the Foundation`s For Life Without Thalassemia program. These projects are contributing to the defending the public against health dangers in Azerbaijan.

Protection of public health is a top priority for Azerbaijan, according to Hadi Rajabli, MP. Also a wide range of state programs related to the protecting the health and well-being of Azerbaijani citizens from various diseases and with preventing harm and reducing impacts have been realized.

Head of UNICEF Baku Office Mark Hereward highly valued achievements and projects realized on the initiative of Mehriban Aliyeva, President of Heydar Aliyev Foundation, UNESCO and ISESCO Goodwill Ambassador, in the field of public health.

More than a half of newborns are anemic in Azerbaijan.


Cord blood service formally launched

June 15, 2010

Courtesy: gulf-times.com
Hamad Medical Corporation’s Women’s Hospital, which catered to as many as 15,553 births last year, has become the first public hospital in the region to offer a private cord blood banking programme involving extensive patient education.

The formal launch of the cord blood banking services, implemented in partnership with Virgin Health Bank-QSTP, was held yesterday at an event at HMC’s Hajar Auditorium.
Women’s Hospital executive director Nish Patel, VHB-QSTP CEO Dr Rajan Jethwa, Women’s Hospital’s obstetrics and gynaecology consultant Dr Arabo and other dignitaries were present.

“We are offering our patients and their families a whole new frontier of medical therapy through the cord blood banking services,” Patel stated on the occasion.

“Our goal is to reach families, especially mothers, and raise their awareness and enable them to make an informed decision,” he explained.

The official recalled that HMC and VHB QSTP had signed a Memorandum of Understanding in December 2009 to offer the service and initiated a comprehensive training programme in January this year for Women’s Hospital staff.

The programme is intended to provide families with the opportunity to purchase high quality cord blood stem cell storage should they wish to do so.

Dr Jethwa pointed out that umbilical cord blood stem cell transplants are today used to treat over 80 diseases, principally for conditions like leukaemias and blood disorders like beta thalassemia major and sickle cell anaemia.

It is also anticipated that in the future stem cells will form the basis of developments in regenerative medicine.
Families, who choose to have their babies delivered at the Women’s Hospital, can contract with VHB QSTP to bank their newborn’s cord blood for an initial period of 20 years, by paying a one-off charge of QR12,950.

“Our multilingual counselling team is available by telephone, e-mail or at Women’s Hospital, which is responsible for about 95% of births in Qatar, and specially trained personnel will collect the cord blood using best practice techniques,” Dr Jethwa said.

Information on the service is also available at Primary Health Centres, where expectant mothers go for antenatal care until the 32nd week of pregnancy, before being referred to the Women’s Hospital.

“The process of cord blood collection does not interfere with our clinical work,” Dr Arabo explained while observing that there is an increased demand the world over to store cord blood stem cells.

It was also clarified that in the process of cord blood banking, only adult stem cells are harvested so there are no ethical considerations and the process has been confirmed as being Shariah compliant.
In a message, HMC managing director Dr Hanan al-Kuwari maintained that HMC is always striving to deliver the highest quality standards of healthcare and the partnership with VHB-QSTP is an integral part of that endeavour. Until VHB-QSTP’s cord blood stem cell processing and cryogenic storage facility is ready by the end of this year, all cord blood units collected from Qatar will be taken to VHB’s facility in London.


Indians at Risk for Rare Blood Disorder Thalassemia

May 15, 2010

Courtesy by: indiawest.com

Indian Americans are at greater risk of contracting thalassemia than many other ethnic groups, according to a study by the Children’s Hospital and Research Center Oakland in Oakland, Calif. To coincide with International Thalassemia Day May 8, the hospital is urging the community to get tested — and to seriously consider banking their infants’ cord blood.

The rare and hereditary blood disorder can result in severe anemia. Children with thalassemia often require frequent blood transfusions and lifelong medical treatment.

Gargi Pahuja, a health care law attorney in New York, was diagnosed with thalassemia when she was 12 months old. “My parents were from India and they hadn’t heard of it,” Pahuja told India-West in a phone interview. “They were shocked to find that they carried the trait.”

Since thalassemia is so rare, some doctors are likely to confuse its symptoms, which include yellow skin, with jaundice. But thalassemia is a much more serious disease.

Thalassemia (also known as Mediterranean anemia) is an inherited blood disorder characterized by less hemoglobin and fewer red blood cells in the body than normal. Since hemoglobin allows red blood cells to carry oxygen, a deficiency leads to anemia, marked by fatigue, pale appearance, shortness of breath and weakness.

Pahuja is 35 years old, and continues to get blood transfusions every two weeks.

“The fact that I’m 35 is an important milestone,” she told India-West. “My parents were told that I would die by the age of 15 … my generation is the first to live into their 30s, 40s and 50s.”

The cause of thalassemia is defects in the genes that make hemoglobin. The only way to contract thalassemia is to inherit one or more defective hemoglobin genes from your parents.

Infants in California are required to receive a test for thalassemia, but California is the only state to require the test, said Pahuja.

Bone marrow transplant is the established treatment to cure thalassemia. Umbilical cord blood stem cells donated by a sibling have been proven to cure 91 percent of cases, according to a 2007 Children’s Hospital study of 40 children.

A Mayo Clinic statement said that most children with moderate to severe thalassemia show signs within the first two years of life. Prenatal testing is also available, at 11 weeks (chorionic villus sampling), 16 weeks (amniocentesis), and 18 weeks (fetal blood sampling).

“People need to be tested so that they can make informed decisions regarding family planning,” said Pahuja.

The Children’s Hospital study showed that in the United States, around two million people are carriers and that around 1,000 people have the full-blown disease. The hospital has one of the largest thalassemia centers on the West Coast, and currently treats around 300 patients.

In the U.S., there are more than 5,000 thalassemia cases, and those numbers are expected

to rise as the trait carrier population increases, said the study; in Alameda County alone, the Asian Indian population is more than 47,000 and has increased by 209 percent in the last decade, according to statistics provided by the Asian American Pacific Islander Health Forum.

According to Pahuja — who says she has devoted her professional and personal life to increasing awareness of thalassemia — people from North India are especially at risk. “If you are Punjabi, or Gujarati, or Sindhi, you need to get tested,” she told India-West. Individuals who are past child-bearing age need not get tested, she added.

In India, as many as one in eight people are believed to be carriers of the thalassemia gene, and in India, it is expected that 1 million people will have the disease in the next 40 years. Babies born there are 80-90 percent likely to die of the disease, said the Children’s Hospital spokesperson. But increasing awareness of the disease there has opened up a market for blood cord banking; a recent Mumbai Mirror article states that there are now three private stem cell banks — one run by Reliance in Mumbai; the CryoCell stem bank in New Delhi; and Life Cell, run in collaboration with Cryo-Cell International, U.S.A., in Chennai.

In India, it costs around Rs. 70,000 ($1,575) to preserve a newborn’s cord blood for 20 years. Here in the United States, the average cost is around $2,000.

For more information on thalassemia, call Children’s Hospital Oakland Thalassemia Outreach at (510) 428-3885 or Cooley’s Anemia Foundation at (800) 522-7222, or visit http://www.thalassemia.com, http://www.childrenshospitaloakland.org/healthcare/depts/hematology_services.asp or http://www.thalassemicsindia.org.


A long but successful journey of Kerala’s blood disorder patients

March 31, 2010

Courtesy by: twocircles.net

They traveled three thousand kms by train taking three days and two nights to reach NewDelhi, the capital city of India. One of the main motivations behind this journey was 4th International Conference on Thalassemia which took place on 31st October and 1st November 2009 at Hotel Intercontinental Eros New Delhi. Actually they came to New Delhi not for attending the conference. They couldn’t speak or understand English or Hindi, the national language of the country. Most members of them were Thalassemia afflicted patients and their parents. Some were other blood disorder patients like Sickle cell anemia, Hemophilia, Applastic anemia and Leukemia.

Kerala is a small state with 3crores of population in utmost southern part of India. Kerala is not only a role model state in health services in India but also a complete literacy state in the nation. In the tourism map it is known as God’s own country. In Kerala near about fifty percent of population belong to Hindu religion community. Above 20% are Christians and above 25% are Muslims. The communist ideology is ruling this small state in alternative five years term getting elected by the people for last 25 years. Rest of the period after Independence has been ruled by the Indian National Congress. The communal fabrication with social amity and the peaceful social life is the salient feature of this small state. No space here for communal violence or hatred in the name of religion, caste or creed.

One of the major achievements in health sector is the low child mortality rate. But this phenomenon rises the morbidity rate of children same as the developed countries. But unlike the developed countries Kerala has no facilities to prevent or to avoid this like morbidity rate by using new technologies like antenatal diagnosis. These pathetic situation causes to rise various kinds of hereditary disorder disease like Thalassemia, Sickle cell anemia, Hemophilia and different kinds of birth defects. In Wayanad, a hill district of Tribal people in north Kerala alone, about five thousand persons are suffering from sickle cell disease among the tribal. Twenty thousand carriers among the tribal are the major threat in the health sector in the future years in hereditary disease.

Even though the prevalence of blood disorder patients is very high in north Kerala especially in Malabar region no sufficient facilities are available in hematology check up and no service of hematologist in this state.

Blood Patients’ Protection Council (BPPC) is an organization of acutely blood disorder patients like Thalassemia, Hemophilia, Leukemia, Sickle cell anemia and their parents have been fighting for the better treatment, life saving drugs and vital right of these patients for the past fifteen years. For achieving the birth right of patients many agitations were organized like road blockade including a state Secretariat march by traveling 800 km by BPPC. But the Govt. took a stubborn position against the patient’s demand. That was the one reason compelling the patients to travel to New Delhi by declaring a parliament march.

They raised slogans demanding better treatment and life saving drugs for acutely ill patients and demonstrated towards the Indian parliament on 29th October 2009. The patients raised 10 point demands including the set up of an antenatal screening facilities at Calicut medical college hospital where depends 1.5 crore people for better treatment in Malabar area and some part of Karnataka and Tamil Nadu state. Near about 100 blood disorder patients and their parents took part in the parliament march. Delhi police blocked their march with barricade at Jantar Mantar, New Delhi. The march was organised by BPPC under the leadership of Kareem Karassery, the General Convener of BPPC.

Tom Vadakkan, Secretary, Indian National Congress, the ruling party of India inaugurated the march. After the march, the participants rushed to All India Congress Committee Office New Delhi. Patients and their parents expressed their grievances and the miseries due to lack of expert treatment, life saving drugs and other ill feelings before the eminent leaders and office bearers of the ruling party (AICC) of India.

Dr. Shakheel Ahmed spokesperson of the ruling party addressed an elaborate press conference with the blood disorder patients and their parents from Kerala at AICC office. AICC Secretary Tom Vadakkan was also present in the crowded press conference. Dr. Shakheel Ahmad assured the acutely ill children and their parents from Kerala that the Govt. of India and the health and family welfare department will take urgent step to solve the 10 points demand raised by BPPC Kerala. They would bring the matter before the president of the Congress party Sonia Gandhi, central health Minister Gulam Nabi Azad and AICC gen. secretary Rahul Gandhi immediately. Only after achieving the assurance from the ruling party head quarters the patients and the parents returned from there.

The following day patients visited all monumental and significant tourism places in Delhi with their parents. They also visited Indian Parliament. Some office bearers of BPPC were delegates of the International Conference on Thalassemia at Hotel Intercontinental Eros. Due to the medium of conference and instructions was English/Hindi rest of the members of this team couldn’t register or attend the conference and same day they went to Agra and visited the Taj Mahal, one of the seven wonders of the world and other world heritage monuments like Agra Fort and well known pilgrimage center like Madura Temple etc. This journey was very pleasant for the children who are suffering with fatal diseases, especially for school going students. Parents also enjoyed this trip as great relief and relax from their painful fate of prolonged life.

On 2nd October 2009 all patients and their parents were attended in the Thalassemia clinic at Sir Gangaram hospital which was constituted by the part of International conference on Thalassemia for the registered patients. But most of our patients or their parents were not registered in the conference. Yet, Dr. V.K. Khanna, Head, Department of Hematology, Sir Gangaram hospital agreed to check up all patients even in the busy day.

The patients got a thorough check up and well medical advice from the clinic. Ms. Shoba Tuli, vice president of Thalassemia International federation helped for facilitating the check-up. Dr. P.M. Kutty, President, Malabar THAS Society, Dr. V.T. Ajith Kumar treasurer of the society also helped to make this check up a reality. The hospital authority served good delicious snacks to the patients. They returned from the hospital after the check up was over with the immense gratitude to the Gangaram hospital especially to Dr. V.K. Khanna. Many Malayalam Language dailies published this news of events with the group photograph of patients with Dr Khanna.

The following day all patients and their parents returned from New Delhi after a week-long tremendous mission and good feelings with significant knowledge to their home state by train. We reached on 5th October without any inconvenience. The journey was good with songs, jokes and dance of children.

When we reached Calicut a letter from Union Health Minister Gulam Nabi Azad reached to Calicut. He said in his letter that he has examined the matter and would get back to us shortly. In another letter sent by the secretary of All India Congress Committee (AICC) Rama Chandra Kundiya, MP, mentioned that Sonia Gandhi, President, AICC, forwarded the application submitted by BPPC to the health minister.

Along with these responses a breakthrough occurred in the health field of Kerala.

Ms. P.K. Sreemathi, health minister of Kerala declared that all acutely ill patients below eighteen years of age will get free treatment from Jan 2010 without considering their income. Besides, central health minister informed the local MP M.K. Ragavan that he sanctioned Rs 3 crore for the development of oncology department at MCH, Kozhikkode with immediate effect. The annual central budget allocated a considerable amount for the development of public health sector.

Blood disorder patients and their parents believe that the multi-purpose journey to New Delhi was not in vain. They are expecting more from the Central and State Government.

(Kareem Karassery is General Convener, Blood Patients’ Protection Council, Malabar Zone, Kerala, India, and can be contacted on 9447019182)


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