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A call for Hemophilia Disease awareness

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By Usman Oladimeji

More than 38,000 persons were living with hemophilia B in 2021.

During a virtual media round table organized by Pfizer, an American multinational pharmaceutical and biotechnology corporation on Thursday to commemorate the World Hemophilia Day, experts in the healthcare system have called for increased public awareness of hemophilia disease as a way of preventing and controlling the bleeding disorder. Today, being April 17, marks this year’s annual World Hemophilia Day (WHD) with the theme “Access for All: Prevention of bleeds as the global standard of care”.

The annual WHD is observed to convey a call to action for governments to broaden the availability of treatment and care for persons with bleeding disorders, with a particular focus on improved bleed management and prevention. Hemophilia is a rare genetic bleeding disorder caused by a deficiency of one or more of the blood clotting components. According to the World Federation of Hemophilia (WFH), more than 38,000 persons in the globe were living with hemophilia B in 2021.

Even minor injuries may be fatal for those with hemophilia.

Similarly, Professor Sulaimon Akanmu of Lagos University Teaching Hospital (LUTH) in Idi-Araba has made a similar call for improved patient access to hemophilia treatment. He explained that males are more likely to develop hemophilia because of maternal X-chromosome passed down directly from the mother. Even minor injuries may be fatal for those with hemophilia due to the possibility of excessive and repeated bleeding. In addition, he noted, persons with severe hemophilia often bleed spontaneously into their muscles or joints, or very infrequently into other vital tight areas like the intracranial region, where bleeding may be life-threatening.

According to the Hematology Professor, both the general public and medical professionals have a poor understanding of hemophilia and its symptoms. Due to this, hemophilia is underdiagnosed in the nation. He believes there’s a lot more work to be done to raise public awareness of hemophilia given that so many male youths are being lost to the disease. A case of Hemophilia might be suspected when there is prolonged bleeding or delayed wound closure after an umbilical cord is cut.

People with hemophilia B have a substantial burden to bear.

Conversely, he noted that the Hemophilia Federation of Nigeria is actively working to enlighten pregnant women and medical professionals about hemophilia and its early symptoms. Dr. Vivian Painstil, a senior specialist pediatrician at Ghana’s Komfo Anokye Teaching Hospital in Kumasi, claimed that hemophilia may be difficult to manage, nevertheless those who have it can lead relatively normal lives so long as they take particular measures to avoid and control bleeding. People with hemophilia B have a substantial burden to bear and many have regular infusions or injections, which might limit their capacity to take part in normal everyday activities.

She further advocated for a better synergy of efforts to advance hemophilia diagnosis, accessibility of care, social support, and public understanding. In addition, Pfizer’s Medical Director for sub-Saharan Africa, Mr. Kodjo Soroh, emphasized the company’s commitment to making those affected by hemophilia are cared for and feel loved. Mr. Soroh continued, saying that Pfizer will keep pushing to improve the lives of those with hemophilia by discovering innovative treatments. He asserts that this year’s WHD theme, Access For All: Prevention of Bleeds, aligns with Pfizer’s efforts to advance diagnosis for hemophilia and overcome gaps in access to care.

Pfizer committed to developing diagnosis for hematological disorders.

The corporation’s over 30 years of experience depict its commitment to equity and continued investment in hemophilia. During these years, Pfizer has been committed to developing therapies for hematological disorders as it has a deep understanding of the significant challenges that people living with the disease continually face. Mr. Soroh reiterated that Pfizer would continue to amplify and commend the effort of the global hemophilia community as it created awareness on the need for innovation in access to hemophilia treatments.

Related Link

WHF: Website

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