الخميس، 17 يونيو 2010

Blood screening before marriage

We all believe that marriage is arranged in heaven. Allah plans and selects our spouses and he knows what is best for us. However, this is a secret and it’s up to individuals to exercise their choices to find out who their partner is.

We usually follow our hearts into marriages. Whether we choose to marry a cousin, a distant relative or someone outside the family circle it is usually our hearts that influence us most. When we love and make our choices it is very difficult to think otherwise. We pray and hope the marriage will be everlasting and produce happy, healthy offspring. But sometimes along the line something unexpected might happen and that may place a marriage in distress.

There is nothing more stressful in the family than when a child is born with a blood disorder like Sickle Cell or Thalassemia. This does not only hurt the child but puts pressure on the whole family as well. A child like this needs a lot of care and attention and as a result it occupies much of the parents’ time.

Unfortunately many people especially those who are not aware of how blood disorders happen in a family, tend to blame a woman for passing it on to the children. They think since a child grows in a woman’s womb and gets all the needed nutrients through her blood circulation, she is the one who is responsible.

Till now many are still ignorant of how the disorders are inherited and passed from a parent to a child. For years people have believed that it is just the work of Allah and there is nothing they can do about it. Thanks to the modern technology that has opened doors to discoveries of many medical problems and their prevention. A simple blood test can detect if a person is a carrying a gene that is responsible for a certain disorder within minutes.

Because Oman is one of the countries that has 58% of its people carrying one of the Hereditary Blood Disorder and many children are born with these disorders, has now open free detecting centres all over the country. Pre marriage blood screening is now easily accessible to any person who wishes to be screened. They also provide free consultation for those who need it.

It is very important for everyone to know if he / she is carrying the gene which makes him/ her a ‘CARRIER’ of the disorder. Carriers usually do not know or even feel they are carrying the gene. It is only after marrying another carrier and if their child inherits both their genes to be born with full blood disorder, then they realise that they have a problem.

The question here is; how can a carrier convince his or her fiancée to go for blood screening?

Due to our culture many people hesitate to suggest for fear of offending the other family. Parents are usually disgraced by the idea. They might think that the fiancée wants to find out if their child is infected by insulting diseases. Sometimes a conflict occurs and the marriage does not take place just because people are still not aware of its importance and its consequences. Many keep their finger crossed and go a head with the marriage.

What do you think? Please share your views?

الاثنين، 14 يونيو 2010

WORLD SICKLE CELL DAY(19-29)June 2010




الخميس، 10 يونيو 2010

Sickle Cell Disease World Day

The Sickle Cell Disease Association of America (SCDAA) is proud to announce the observance of the First Annual Sickle Cell Disease World Day. This day of observance is the product of the December 18, 2008, United Nations Resolution that called for the recognition of sickle cell anemia as a public health problem and “one of the world’s foremost genetic diseases.” The resolution calls for member States and the organizations of the United Nations system to raise awareness of sickle-cell anemia on June 19th of each year at the national and international level.

SCDAA would like to acknowledge the efforts of the Sickle Cell Disease International Organization (SCDIO) in bringing about the passage of this United Nations Resolution and in establishing this annual international day of awareness.

The public celebration of this resolution will be held June 19th at the United Nations Headquarters in New York in partnership with the World Health Organization (WHO), the United Nations Children’s Emergency Fund (UNICEF), and the United Nations.

The resolution has seven major components;
1. Recognizes that sickle cell anemia is a major health problem
2. Underlines the need to raise public awareness about sickle cell anemia and to eliminate harmful prejudices associated with the disease
3. Urges Member states and organizations of the United Nations to raise awareness of sickle cell anemia on the 19th of June each year at the national and international levels
4. Encourages member states as well at the United Nations member agencies, funds and programs, international institutions and development partners to support health systems and primary health care delivery, including efforts to improve the management of sickle cell anemia
5. Invites member states, international organizations and civil society to support the efforts being made to combat sickle cell anemia, including as part of health-system strengthening efforts in the various development programs, and to encourage basic and applied research on the disease
6. Urges the Member states in which sickle cell anemia is a public health problem to establish national programs and specialized centers for treatment of sickle cell anemia and facilitate access to treatment
7. Requests the Secretary-General to bring the present resolution to the attention of all Member states and organizations of the United Nations system.

السبت، 5 يونيو 2010

Internationa Day for Sickle Cell Anemia اليوم العالمي لخلايا الدم المنجلية

يسر الجمعية العمانية لامراض الدم الوراثية إحاطتكم بأنها تعتزم إقامة فعالية بمناسبة اليوم العالمي لخلايا الدم المنجلية خلال الفترة 19-20 يونيو الجاري بمسقط سيتي سنتر بهدف رفع مستوى الوعي بأمراض الدم الوراثية وأهمية الفحص الجيني قبل لزواج إلى جانب أهمية التبرع بالدم لإنقاذ أرواح كثيرة بقطرة دم
نتمنى منكم المشاركة بتبرعاتكم على حساب الجمعية ببنك مسقط على رقم 0307012401620015



Dearest friends.
We would like you to join us in recognizing and celebrating June 19th, the Internationa Day for Sickle Cell Anemia. Please help our newly Oman Hereditary Blood Disorder Association (OHBDA) that has been officially chartered by Ministry of Social Development (MOSD) to fund the activities and programs of the above mentioned Day. Your cash donations is going to be spent on printing brochures, mugs, pens, t-shirts and other expenses that would be needed to make this event a success. Please help us raise awareness and respond to the plight of patients and their families especially the under privileged ones.
Your charitable generous hearts are an honorable contribution. We also appreciate noting this Day on your calender and spare time to visit the event venue at Muscat City Center on the 19th through 20th June,2010. OHBDA's account number 0307012401620015 Bank Muscat.

الجمعة، 4 يونيو 2010

معلومات أولية عن الجمعية Introducing the association


من نحن؟
الجمعية العمانية لأمراض الدم الوراثية هي جمعية أهلية غير ربحية مقرها في العاصمة مسقط. تقدم الجمعية خدمات وبرامج توعوية مساندة على المستوى الصحي والنفسي والاجتماعي بالتنسيق مع المؤسسات ذات العلاقة انطلاقا من مبدأ الشراكة الاجتماعية.
اشهار الجمعية:
أشهرت الجمعية في الرابع عشر من يونيو لعام 2009م.
رؤيتنا:
أن تصل خدماتنا إلى كل بيت عماني بحلول عام 2020 وأن نبني جسورا للتواصل وطنيا مع أشقائنا في جمعيات خدمة المجتمع، وإقليميا مع نظرائنا على المستويين الخليجي والعربي.
رسالتنا:
العمل على توعية المجتمع العماني بأمراض الدم الوراثية وآثارها على المجتمع وطرق الحد من انتشارها، ومساعدة المرضى وأسرهم، والعمل على إيجاد التشريعات والبرامج والدورات والأنشطة التي تسهم في تحقيق رؤية الجمعية.
مبررات انشاء الجمعية:
إن أمراض الدم الوراثية " ونعني بذلك فقر الدم المنجلي والثلاسيميا ونقص الخميرة " منتشرة إنتشاراً واسعاً في عمان وتشير آخر الإحصائيات في هذا المجال إلى أن:
أ‌. فقر الدم المنجلي ينتشر بمعدل 6% بين سكان عمان بما في ذلك 0.2% مصابين بهذا المرض.
ب‌. الثلاسيميا "β " منتشر بمعدل 2% بين السكان.
ت‌. بعض التغيرات تنتشر بين السكان بنسب أقل بمعنى أن حوالي 10% من سكان عمان يحملون جين لأحد أمراض الدم الخطيرة.
ث‌. 25% من الذكور و 10% من الإناث في عمان مصابين بنقص الخميرة.
ج‌. منطقة الباطنة ومسقط هي أكثر مناطق عمان تأثراً بالثلاسيميا.
ح‌. منطقة الداخلية والشرقية هي أكثر المناطق تأثراً بفقر الدم المنجلي.
أهداف الجمعية:
أ‌. خلق قنوات اتصال توعوية بين المصاب و ذويه و أهل الاختصاص في المجال الطبي والعلاجي، وأخرى للتوعية المجتمعية.
ب‌. تأسيس مركز تثقيفي و توعوي بالتنسيق مع المؤسسات المعنية بتقديم العناية والخدمات الصحية، و مكاتب الولاة.
ت‌. عقد حلقات توعوية لطلاب المدارس بالتنسيق مع المؤسسات المعنية بتقديم الخدمات التعليمية والصحية ضمن برامج "تثقيف الأقران"، و "برامج الصحة المدرسية".
ث‌. تقديم الاستشارات النفسية للمصابين وأسرهم، و تزويدهم بأية معلومات تستجد.
ج‌. السعي مع الجهات الحكومية و التشريعية لاصدار لوائح تدعم ضرورة الفحص الجيني للمقبلين على الزواج.
ح‌. إعداد قاعدة بيانات بالمصابين في السلطنة مع مراعاة الحفاظ على سرية المعلومات.
خ‌. متابعة نتائج البحوث العلمية والمستجدات العلمية في علاج أمراض الدم الوراثية.
د‌. تشجيع و دعم إجراء البحوث العلمية ذات العلاقة.
ذ‌. المشاركة في الأنشطة المحلية والاقليمية والدولية التي تتناول أمراض الدم الوراثية وقضاياها.
ر‌. الاحتفال بالأيام العالمية لأمراض الدم الوراثية.
أولويات برامج الجمعية:
أ‌. تطوير برامج المهارات الحياتية.
ب‌. تطوير العناية والخدمات المقدمة للمرضى وأسرهم.
ت‌. تأكيد أهمية فحص ما قبل الزواج وتقليص نسب انتشار المرض.
ث‌. بناء بيئة ايجابية فاعلة ومتفاعلة.
ج‌. تعزيز الوعي الفردي والمؤسسي حول صحة الأسرة والمجتمع.
ح‌. ايجاد لائحة لحقوق المرضى في مؤسسات الرعاية الصحية.
استراتيجيات برامج الجمعية:
أ‌. التأييد والدعم التشريعي والتكنولوجي والتطبيقي.
ب‌. بناء القدرات والطاقات.
ت‌. تعزيز الصحة النفسية والبدنية.
ث‌. مراقبة أوضاع المرضى و مؤشرات انتشار المرض.
ج‌. المساهمة في تحقيق أهداف الألفية و خطط السلطنة الإنمائية الخمسية.
شركاؤنا:
أ‌. وزارة التنمية الاجتماعية.
ب‌. وزارة الصحة.
ت‌. وزارة التربية والتعليم.
ث‌. وزارة الاقتصاد الوطني.
ج‌. مؤسسات القطاع الخاص والجمعيات الأهلية.
ح‌. وزارة الإعلام.
خ‌. وسائل الإعلام.
د‌. صانعو القرار.
ذ‌. المنظمات الدولية.
للتواصل:
للاشتراك أو لمزيد من المعلومات حول أنشطة الجمعية وبرامجها يمكنكم التواصل من خلال البريد الالكتروني: OHBDA@omancares.org- العنوان: ص.ب. 592، ر.ب. 115 مسقط، سلطنة عمان أو من خلال الموقع الالكتروني: www.omancares.org أو على ت: +968 24538133
يقع مكتبنا في الحيل الجنوبية، سكة 3138، مجمع 331.

Who are we?

Oman Hereditary Blood Disorder Association (OHBDA) is a non-profit organization based in Al-Hail Al-Junoubia-Muscat, Oman. OHBDA has been officially announced on the 14th of June 2009 according to the Ministerial Decision No. 75/2009 with the aim of creating awareness among public on how to avoid the spread of hereditary blood disorders, and to provide a wide range of services. Key services include: creating public awareness, counseling, tracking services for parents with infants who screen positive by the State Laboratory, family counseling and support services, as well as coordinating medical and social services with the concerned organizations and in-charge institutions energizing an effective social partnership.

Our Vision:

Provide our services to each Omani house by the year 2020 and to enhance our ties with all NGOs in Oman, and the counter NGOs in the GCC area, region and worldwide.

Our Mission:

To raise the level of awareness on hereditary blood disorders in Oman and acquaint the community with the means to limit the spread of the blood disorders, as well as assist patients and their families advocate for their right to have better medical care and services with the power of law beside having effective programs and activities that would contribute in achieving the Association's vision.

Why OHBDA Exists?

Hereditary blood disorders (Sickle Cell, Thalassemia, and G6PD) are widely spread in Oman, and the latest statistics indicate that:

· Sickle cell anemia is spread among 6% Omanis by which 2% are patients.

· Thalassemia (Beta) is spread among 2% Omanis.

· Around 10% Omanis are carriers of one of most dangerous blood disorder genes.

· 25% Omani males and 10% Omani females are G6PD patients.

· Thalassemia is mostly spread in Batinah and Muscat.

· Sickle cell is mostly spread in the Interior and Al Sharqiya.

Our Objectives:

· Create educational channels of communication between patients, their families and medical specialists, as well as for public awareness.

· Establish an educational center for the purposes of awareness in coordination with the responsible institutions for providing medical care and services.

· Hold educational discussion panels and workshops in both public and private schools for students and teachers to be aware of genetic blood disorders.

· Offer advice and psychological counseling services to patients and their families and inform them of any updates.

· Work closely with the relevant governmental bodies to authorize laws and regulations that put pressure on the significance of pre-marriage genetic screening.

· Develop a database of patients with hereditary blood disorders in the Sultanate, taking into consideration maintaining the confidentiality of such information.

· Track and follow up the latest findings and results of research on treatments and provide them to patients and their families.

· Encourage relevant research to be carried out.

· Participate in local, regional and international events and activities that tackle hereditary blood disorders or any relevant issues.

· Celebrate World Days for Hereditary Blood Disorders.

OHBDA Program Priorities

· Develop life skill programs.

· Develop care and services provided to patients and their families.

· Ensure the significance of pre-marriage genetic screening and limit the spread of blood disorders.

· Establish an interactive, positive environment.

· Enhance individual and institutional wise awareness on community and family health.

· Develop patients' rights and register in health care provision institutions.

OHBDA Program Strategies

· Practical, technological and legislative advocacy and support.

· Capacity building.

· Enhance physical and psychological health.

· Monitor patients' conditions and the indicators of hereditary blood disorders spread.

· Contribute in achieving the millennium goals and the country five year development plans.

Our Partners:

· Ministry of Social Development.

· Ministry of Health.

· Ministry of Education.

· Ministry of National Economy.

· Private Sector and NGOs.

· Ministry of Information.

· Mass media communication means and channels.

· Decision makers.

· International Organizations.

Contacts us:

For participation in OHBDA activities and programs or for further information please contact us through: E-mail: OHBDA@omancares.org

Address: P.O. Box 592, PC 115 Muscat, Sultanate of Oman

URL: www.omancares.org or call: +968 24538133

Our office is in Al Hail Al-Junoubia, Way No. 3138, Complex: 331