Thalassemia: Learn something, will you?

Courtesy: tribune.com.pk

For over four years, Fight Against Thalassemia (FAiTh) has been trying to convey a simple message across to the government: to pass and implement a Pre-Marital Mandatory Tests Bill in the country. This is a simple request for a simple bill and a simple solution to highly complex problems that our society faces today.

Even though right now there are no government-based Thalassemia treatment centers, this situation will improve soon as there will soon be as many as seven Thalassemia treatment centers run by the Government of Pakistan. The exact date of when these centers will be setup however, only two G’s know: God, and Government.

FAiTh has attempted to utilize a myriad of media: from print to web-based, from television to spreading awareness on its own through the help of media owners. While FAiTh was busy with awareness campaigns, the Khyber-Pakhtunkhwa assembly sent us a shocking, yet pleasant surprise: they passed the Pre-Marital Mandatory Tests Bill.

This was a cause for celebration! However, this overwhelming joy was quickly swept over by another question: When a conservative province like the Khyber-Pakhtunkhwa is progressive enough to pass the bill, why are the other provinces so reluctant?

The North West is a place where the men do not want anyone to see their female counter-parts. I salute them for passing the bill and giving other provinces what we call, “ghairat ka dose.”

And, just after a few short days, the Sindh Assembly gathered all of its courage, and passed the resolution as well! What a brilliant milestone!

This is all great! However, what the Punjab Assembly did comes as a big slap across the metaphorical faces of all the other Provincial Assemblies. I understand that I am going to be opposed with many objections after this post. Even as I wrote this, I came up with several queries myself, such as it will be an invasion of privacy or that more problems will be caused for girls and aged women who are still awaiting their match.

I am supporting this bill because of the medical check-up made necessary. This can surely help to put a full stop to the birth of 5,000 Thalassemic children every year. It is not the children, that shouldn’t be born. It is Thalassemia. I have mentioned in my earlier posts as well, that I am representing Thalassemia patients of Pakistan. I am their ambassador, and I speak for them when I assert that they will be happy with this new law.

Now, the National Assembly needs to get some ‘ghairat‘ and do their part: implement the law countrywide!

All dressed up and no equipment to go

Courtesy: tribune.com.pk

LARKANA: The teaching hospital that caters to people from three provinces will soon be boasting of a newly equipped Thalassemia centre and burns unit.

According to the medical superintendent (MS) of the Chandka Medical College Hospital (CMCH), Dr Zulfikar Siyal, the centres were completed by June 30 and will hopefully be open to the public in August.

Some officials in the CMCH alleged that four ADP schemes for teaching hospitals in the province have “hit snags” because the health department did not use the funds marked for the development till the very end of the last budget year. While the MS did corroborate that the Thalassemia centre and burns units at CMCH were only completed by the end of June, the last month of the budget year, he had no complaints. “It is a great thing that the Sindh government is working for the development of a teaching hospital like Chandka,” he said.

While the unhappy officials, who requested anonymity, also complained of late equipment and instruments, Dr Siyal said that all transactions had been made and the deliveries too would be completed in the first two weeks of July. “The health department told us to expect them by July,” he said, adding that the equipment was not really needed at once since the centres had only just been completed.

However, sources in the health department said that the equipment did not arrive in time for distribution among the hospitals of the province due to ‘poor execution’ by the administration. Officials in the department and at CMCH maintained that the four ADP schemes in this year’s budget will ‘suffer the same fate as that of the CT scan and MRI machines which were kept away from the beneficiary hospitals for years because of a conflict between the secretary health department and the health minister over commission.

The equipment that has to be delivered includes skin grafting knives, a skin-graft mesher, surgical instruments for the new wards, ECG machines, microscope, dialysis machines, ultrasound machines, ventilators, anaesthesia machines and sterilisation units. Officials alleged that the warrantee period of these machines will expire by the time they are actually installed and used for the benefit of patients.

Meanwhile, Dr Siyal said that installation and establishment of such instruments ‘takes time’, promising to have the wards open within two months.

The total revenue cost of CMCH equipment and instruments for the burns ward was Rs32.7 million while that for the Thalassemia centre was Rs 22.7 million. The urology and cardiology departments were also revamped and extended at costs of Rs23.4 million and Rs31.4 million, respectively. All these funds were retained by the health department, whereas the capital cost for constructing buildings was placed at the disposal of the CMCH MS.

“We used up all of the funds given to us,” said Dr Siyal. “As it is the money that we get is so little and our needs so many.” He said that in addition to the funds given to them by the government, the hospital also received around Rs10 million from Zakat funds and these too were used up for the hospital’s development.

“We still have so many requirements,” he said. “We have requested the government for a central oxygen system in the hospital.” According to the doctor, the hospital management has to run all their demands pass the health department. The department also supervises the use of money that is handed over to the hospital.

“Sometimes they listen to our demands, sometimes they don’t,” Dr Siyal told The Express Tribune.

The CMCH is one of the biggest hospitals in Larkana district. It caters to people in more than eight districts of upper Sindh, parts of Balochistan and also lower parts of Punjab. It has 1,250 beds, all of which are “always occupied”, said the doctor.

Official calls for premarital medical test

Courtesy by: arabnews.com

It called for the criminalization of marriages in which premarital medical checks are not carried out and the Ministry of Justice’s endorsement is not obtained.

The Health Affairs Department made the statement after discovering a number of potential couples carry genetic or communicable diseases, Al-Madinah newspaper reported.

“Health officials discovered that 1,801 persons were unfit for marriage out of a total of 92,149 people who underwent medical checkups over the past five years,” said Saeed Al-Zahrani, spokesman for the Health Affairs Department in Taif.

Of those tested, four were HIV-positive, 931 carried sickle cell anemia genes, 17 carried the actual sickle cell disease, 307 were either carriers or ill with thalassemia, and 542 were carriers of hepatitis B or C.

Al-Zahrani called on would-be couples not to neglect the checks, adding that 34 people went ahead with their marriages even though checkups showed they suffered from genetic diseases.

He said such people are jeopardizing the health of their future children and subsequent descendants.

Sheikh Abdul Mohsen Al-Obeikan, adviser at the Royal Court, also called on punishing marriage registrars who ignore premarital checkups when conducting marriages.

He added that there is a committee at the Justice Department to monitor marriage officials who register marriages without completing necessary formalities.

“An official who conducts a marriage without fulfilling regulations is responsible for the damages his act might cause to society,” said Al-Obeikan.

Free Screening!

Recently FAiTh (Fight Against Thalassemia) managed to organized a free thalassemia screening facility with collaboration HSC (Hospital Supply Corporation) in a free medical camp arranged by Usman Memorial Hospital, Hussainabad, Karachi.

Target was to screen 200 people for free, but due to lack of time we have managed to screen 122 people and 12 were caught as suspected, further screening is being done and soon they will be mailed their report on their address.

The event was covered by radio FM 107, Saama TV, Business Plus

After this successful event FAiTh soon will be arranging more screening camps on a bigger and better scale.

Pictures: Free Medical Camp!

Free Medical Camp

Free Medical Camp at UMH

FREE MEDICAL CAMP being organized by Usman Memorial Hospital, a project of the Okhai Memon Youth Services for the needy and less-affluent people living in the vicinity of Hussainabad, Gharibabad, Karaimabad, Moosa Colony and adjoining localities.

APART FROM ALL OTHER FACILITIES, THALASSEMIA.COM.PK in collaboration with HSC will conduct FREE BLOOD SCREENING of 200 Participants (Male/Female) to find out any sort of blood-disorders.

Some valuable material about THALASSEMIA for the awareness of general public will also be distributed.

Please avail this opportunity and visit the Usman Memorial Hospital.

Call: 111 UMH UMH (111 864 864)

21 More Rare Diseases Get Free Coverage

Courtesy by: koreatimes.co.kr

The government is set to expand its support for patients suffering from rare diseases, the Ministry for Health, Welfare and Family Affairs announced Monday.

The ministry said 21 more diseases will be added to its list of those covered by free medical care.

Beneficiaries will be patients whose family’s income is less than 4 million won per month, with their assets amounting to less than 200 million won.

One such affliction is thalassemia, an autosomal recessive blood disease that results in severe cases of anemia.

The patients usually need to receive blood transfusions and iron chelation therapy among other treatments, which can sometimes be risky, experts say.

The disease most often inflicts people in the Mediterranean region and parts of northern Africa, but in Korea, their number is estimated to be around a few hundred.

Other rare diseases included on the list are Kufs’ Disease, Nieman-Pick Disease and Krabbe Disease.

The Korea Center for Disease Control and Prevention said the new coverage will benefit some 7,000 people.

Currently, the National Health Insurance Corp. supports 28,900 patients suffering from 111 rare and hard-to-treat diseases.

“The government will cover not only expenses for treatment but provide them with pieces of medical equipment that are essential for walking, breathing and other aids to help them conduct their daily activities. Those with muscle disorders will also receive care by visiting nurses free of charge,” center official Ku Soo-kyeong said.

More information about rare diseases and governmental support for them is available at http://helpline.cdc.go.kr.

JL Software Announces Handbook of High-Risk Obstetrics for iPhone

Courtesy by: prMac.com

[prMac.com] Atlanta, Georgia – JL Software is pleased to announce the publication of the all-new Handbook of High-Risk Obstetrics for iPhone or iPod touch. The Handbook is written for the busy medical student, resident in Obstetrics, or practicing clinician who needs a comprehensive and up-to-date yet concise guide to caring for the woman with a high-risk pregnancy.

Written by R. Harold Holbrook Jr, a board-certified physician with 22 years of experience in academic perinatology, the Handbook covers all major areas of high-risk obstetrics, and is cross-referenced and indexed with over 3,200 keywords. The Handbook provides a quick review of any perinatal topic at the bedside or in the office. Physicians can rapidly check diagnostic criteria, patient counseling information, and treatment options for the woman with a complicated pregnancy.

The Handbook covers the following general areas:
* Pregnancy in patients with coexisting medical problems
* Complications of pregnancy
* Preterm labor and delivery
* Preterm rupture of the membranes
* Management of complicated labor and delivery
* Fetal complications and diseases
* Genetic counseling for risks of fetal anomalies
* Pregnancy counseling for coexisting disease or past complicated pregnancy

The Handbook contains special sections for breast cancer in pregnancy, care of the pregnant patient with spinal cord injury, hypertension and its manifestations, and both gestational and pre-gestational diabetes mellitus. The complications of pregnancy covered include mild and severe preeclampsia, eclampsia, antepartum bleeding, preterm labor, preterm premature rupture of the membranes, and others.

Diagnostic steps and treatment are based on the latest information from the American College of Obstericians and Gynecologists, the CDC, and recent published studies in the major obstetrical journals. Topic pages in the Handbook of High-Risk Obstetrics are extensively cross-referenced with links to all associated topics, allowing the physician or student to start with an overview and quickly consult related information.

The entire text is indexed using more than 3,200 keywords, enabling the busy medical student, resident, or practicing clinician to quickly find all relevant pages via the intuitive search feature. Users can also easily bookmark any page for future quick reference. There is no limit on the number of bookmarks, double-bookmarking is automatically prevented, and bookmarks can be added or removed at any time. To retrieve a bookmarked page, the user simply chooses the Bookmarks icon and taps the desired page from the presented list.

Copy and paste of any text in the Handbook is supported, so clinicians can copy and email or copy and SMS-message any of the numerous protocol lists, medication options, or differential diagnosis summaries to colleagues on-call or at referring institutions.

The Handbook of High-Risk Obstetrics includes concise but complete coverage of all aspects of perinatal practice. Finding the information needed is much quicker than using a textbook, and all of the important points are summarized for a rapid but thorough overview of the topic.

The sections of the Handbook include:

Pregnancy and Coexisting Medical Conditions: diabetes mellitus, chronic hypertension, congenital and acquired cardiac conditions, thyroid disorders, gastrointestinal disorders, hepatic disorders, dermatologic disorders specific to pregnancy, collagen-vascular disease, systemic lupus erythematosus, antiphospholipid syndrome, hematologic disorders, breast cancer and pregnancy, renal disease in pregnancy, seizure disorders, carpal tunnel syndroms, bacterial and viral infections, spinal cord injuries, depression, bipolar disorder, anxiety disorders, and psychosis.

Common Omissions in Prenatal Care: screening for genetic defects, maternal obstetrical history, administration of magnesium sulfate, invasive diagnostic procedures, cause of low-birthweight infants, risk factors for congenital anomalies, signs of fetal compromise, distinguishing common pregnancy complaints from serious disease, and detecting early signs of preterm labor.

Fetal Medicine: symmetric and asymmetric intrauterine fetal growth restriction, detection of fetal anomalies by ultrasound, common chromosome anomalies, fetal hematologic disorders, red cell isoimmunization, neonatal alloimmune thrombocytopenia, alpha and beta thalassemia, sickle cell anemia, sickle S-C disease, sickle-thal carrier state, oligohydramnios, polyhydramnios, twin-twin transfusion syndrome, and congenital infections including rubella, cytomegalovirus, toxoplasmosis, group B beta-hemolytic streptococcus, parvovirus B19, Listeria monocytogenes, varicella (chicken pox), hepatitis A, B, C, and E, HIV and AIDS, and syphilis.

The Screening Ultrasound Exam: in addition to fetal biometric measurements of biparietal diameter, head circumference, abdominal circumference and femur length, normal and abnormal structures are listed for each body area. Examinations include head, brain, encephalocele, lateral cerebral ventricles, choroid plexus, cerebellum, cisterna magna, third ventricle, face, orbits, binocular diameter, intraocular diameter and ocular diameters, lips, cleft lip, nose, chin, neck, spine, chest, fetal heart views, fetal cardiac physiology, fetal circulation, fetal cardiac arrhythmias, lungs, pulmonary sequestration, congenital cystic adenomatoid malformation, diaphragmatic hernia, pleural effusion, abdomen and pelvis, stomach, esophageal atresia, tracheoesophageal fistula, jejunal atresia, duodenal atresia, 3-vessel umbilical cord, single umbilical artery, abdominal wall defects of omphalocele and gastroschisis, renal pelvis, ureteropelvic junction obstruction, hydronephrosis, bladder overdistention, posterior urethral valves, renal agenesis, dilated bowel, echogenic bowel, angulation of the feet, club foot, absent radius, abnormal curvature of the spine, meningomyelocele and spina bifida.

* Intrapartum Fetal Monitoring
* Guide To Fetal Anomalies and Genetic Counseling
* Multiple Gestation

Complications Of Pregnancy:
* Antepartum Bleeding
* Preeclampsia
* Eclampsia
* Gestional Diabetes

Induction of Labor:
* Cervical Ripening
* Management of Labor Induction

Preterm Labor and Delivery:
* Diagnosing Preterm Labor
* Treatment of Preterm Labor

Preterm Premature Rupture of the Membranes:
* Tocolysis
* Glucocorticoids
* Antibiotic Prophylaxis
* Management of Labor and Delivery

Minimum Requirements:
iPhone or iPod touch 3.0 or later

Pricing and Availability:
The Handbook of High-Risk Obstetrics is available on the Apple App Store at an introductory price of $49.99 (USD). All future updates are free of charge to existing customers.

Handbook of High-Risk Obstetrics 1.0
Download and Purchase
Screenshots

JL Software LLC is an independent Macintosh and iPhone/iPod touch development company owned by R. Harold Holbrook Jr, M.D. and has been creating compelling applications for Macintosh computers since 2001 and the iPhone/iPod touch platforms since 2008. JL Software develops exclusively for Mac OS X and iPhone OS, and has extensive experience in programming in Objective-C and Cocoa for the Apple platforms. Dr. Holbrook is board-certified in both general Obstetrics and Gynecology and the high-risk pregnancy subspecialty of Maternal-Fetal Medicine, and has 20 years of experience as medical school faculty in the care of patients with complicated pregnancies. He is a peer reviewer for the major Obstetrics and Gynecology scientific journals and has written several book chapters on high-risk obstetrics as well as more than 25 research articles. Copyright 2009 JL Software. All Rights Reserved. Apple, the Apple logo, iPhone and iPod are registered trademarks of Apple Computer in the U.S. and/or other countries.