drgauravkharya

[drgauravkharya]

Why only 30% of Indians have access to advanced cancer care facilities?

Blood cancers account for approximately 8% of all cancers in India, with more than 1.2 lakh new cases diagnosed annually

Cancer is penetrating India deep and wide. It is one of the leading causes of mortality in the country, with a significantly high prevalence of blood cancers such as leukemia, lymphoma, and multiple myeloma. Despite significant advancements in diagnosis and treatment globally, only about 30% of Indians have access to advanced cancer care facilities. The remaining, scattered across vast rural and semi-urban regions, are left to battle delayed diagnoses, and outdated treatments due to the insurmountable financial burden of modern cancer treatments. For patients with blood cancers — diseases that often progress swiftly and require immediate, intensive intervention — this gap in access is a matter of life and death.

The stats are staggering. Blood cancers account for approximately 8% of all cancers in India, with more than 1.2 lakh new cases diagnosed annually. Leukemia remains the most common form of cancer in children, while non-Hodgkin’s lymphoma and multiple myeloma largely affect adults.

According to the Indian Council of Medical Research (ICMR), one child is diagnosed with leukemia every hour in India. Acute lymphoblastic leukemia (ALL) is the most prevalent pediatric cancer, and while curable in high-resource settings, its outcomes in India depend greatly on where a child is born and how quickly they can access appropriate treatment.

Cancer prevalence in India

Cancer incidence is particularly high in states like Uttar Pradesh, Bihar, West Bengal, Maharashtra, and Gujarat — regions with high population density, industrial pollution, and alarmingly low levels of early detection. In contrast, tribal and rural belts in Odisha, Chhattisgarh, Jharkhand, and Madhya Pradesh report a heartbreaking number of late-stage or completely untreated cases, primarily because specialised care remains a distant dream.

The uneven distribution of cancer care infrastructure is one of the most damaging aspects of this problem. Tertiary cancer centers with the capability to handle complex cases of leukemia, lymphoma, and myeloma — including bone marrow transplants — are concentrated almost exclusively in a handful of metro cities: Delhi, Mumbai, Bengaluru, Chennai, and Hyderabad.

Patients from Tier 2 and Tier 3 towns, or rural districts, are forced to travel hundreds or even thousands of kilometers, often staying away from their homes for months on end. For families, especially those with young children undergoing treatment, this is not only financially draining but emotionally traumatic. It disrupts livelihoods, adds significant out-of-pocket expenses for accommodation and nutrition, and, in many cases, leads to treatment dropout midway.

Shortage of trained oncologists and transplant centers

Adding to the crisis is the severe shortage of trained hemato-oncologists and transplant centers. There are fewer than 300 hematologists and a much smaller number of pediatric hematologists in India who specialise in blood cancers, an alarmingly low number for a population of 1.4 billion. The availability of BMT centers is even more restricted, with fewer than 100 active facilities (majority being low volume centres) across the entire country. The outcome of this imbalance is tragically predictable: long waiting lists, rushed consultations, and missed opportunities for timely intervention. For a disease where timing can mean the difference between cure and relapse, these systemic delays are inexcusable.

[drgauravkharya]

Treatment of Thalasemia and Sickle Cell & Bone Marrow Transplant in Delhi

Delhi's Most Trusted Bone Marrow Transplant Center *Experience Matters: 20+ Years Healing Children with Blood Disorders*

What Makes Our Families Breathe Easier As parents ourselves, we understand how overwhelming a transplant decision can be. That's why we've built:

India's busiest pediatric BMT program - Over 1,000 little lives transformed

Pioneers in parent-to-child transplants - When perfect matches aren't available

Remarkable 9 out of 10 success rate for thalassemia cases

Your Child's Treatment Options Explained Simply

For Childhood Blood Cancers We've helped hundreds beat leukemia using:

Self-cell transplants (when possible)

Full-matched donor cells (highest success rates)

For Genetic Blood Disorders Specializing in complex cases of:

Thalassemia (90% cure rate in matched transplants)

Sickle cell disease (using half-matched family donors)

The Road to Recovery From our experience with thousands of cases:

Matching takes 2-4 weeks (we test entire families)

Hospital stay typically 4-6 weeks

First 100 days are crucial (we provide 24/7 support)

Hear From Parents Who've Been There "When no other doctor would attempt a half-match transplant for our thalassemic daughter, Dr. Kharya gave us hope. Three years later, she's transfusion-free and thriving."

The Mehta Family, Lucknow

Begin Your Consultation Today 📞 +91-8826931012 (24/7 transplant helpline) 🏥 Apollo Hospitals, Sarita Vihar, Delhi 💻 www.gauravkharya.com

[drgauravkharya]

Advancing Pediatric Haploidentical Bone Marrow Transplants: How Apollo Protocols Are Transforming Outcomes for Thalassemia and Sickle Cell Anemia

Haploidentical bone marrow transplantation (haplo-BMT) has emerged as a life-saving treatment for children suffering from thalassemia and sickle cell anemia, especially for those who lack fully matched donors. Despite its potential, traditional haplo-BMT approaches have faced challenges related to graft rejection, transplant-related mortality, and post-transplant complications. The Apollo Protocols, developed and refined by Apollo Hospitals, have significantly improved clinical outcomes, making haploidentical transplants a safer and more effective option for pediatric patients.

The Need for Haploidentical Bone Marrow Transplants

Children with thalassemia major and severe sickle cell disease (SCD) often depend on frequent blood transfusions, iron chelation therapy, and symptomatic management. While matched sibling donor (MSD) transplants offer a curative option, many children lack a suitable match. Haploidentical transplants—where the donor is a half-match, usually a parent—have expanded access to curative therapies. However, overcoming immune-related challenges has been a major focus in improving transplant success rates.

How Apollo Protocols Have Improved Haplo-BMT Success Rates

The Apollo Hospitals Group, a pioneer in advanced medical treatments in India, has developed specialized Apollo Protocols that have enhanced the safety and efficacy of haploidentical bone marrow transplantation. These protocols include advanced graft manipulation, optimized conditioning regimens, and superior post-transplant care to reduce complications and improve survival rates.

Key Advancements in Apollo’s Haploidentical BMT Protocols:

Innovative Graft Engineering & T-Cell Depletion:

The Apollo team has adopted post-transplant cyclophosphamide (PTCy) protocols, a groundbreaking method that significantly reduces graft-versus-host disease (GVHD), a major complication in haplo-BMT.

Selective T-cell depletion strategies help minimize the risk of immune rejection while preserving essential immune responses against infections and leukemia relapse.

Enhanced Conditioning Regimens:

Apollo’s protocols utilize a myeloablative but less toxic conditioning regimen, which enhances engraftment while minimizing transplant-related toxicity.

The inclusion of reduced-intensity conditioning (RIC) regimens for specific patients lowers treatment-related risks, making transplants feasible for high-risk children.

Better Management of Graft-Versus-Host Disease (GVHD):

Advanced immunosuppression strategies, including a combination of PTCy, tacrolimus, and mycophenolate mofetil, have reduced acute and chronic GVHD rates.

Personalized GVHD management has ensured improved quality of life and long-term transplant success.

Improved Supportive Care & Infection Control:

Strict infection prevention measures, including advanced antifungal and antiviral prophylaxis, have significantly lowered transplant-related mortality.

Post-transplant chimerism monitoring and early intervention for mixed chimerism have improved long-term donor cell engraftment rates.

Real-World Impact: Increased Survival and Improved Quality of Life

The implementation of Apollo’s specialized haplo-BMT protocols has led to remarkable improvements in survival rates and transplant success for pediatric patients with thalassemia and sickle cell anemia. Key outcomes include:

Higher Engraftment Rates: Over 90% success rates in sustained donor cell engraftment.

Reduced Transplant-Related Mortality (TRM): A significant drop in early post-transplant mortality compared to older haplo-BMT approaches.

Better Disease-Free Survival (DFS): Improved long-term remission with fewer transplant-related complications.

Minimized Post-Transplant Complications: Effective prevention and management of infections and GVHD, leading to enhanced quality of life.

Apollo Hospitals: Pioneering Advanced Transplant Care in India

Apollo Hospitals continues to lead in hematopoietic stem cell transplantation (HSCT), setting new benchmarks in haploidentical BMT protocols. Through constant innovation and evidence-based medical practices, Apollo is making curative transplants more accessible, safer, and successful for children battling thalassemia and sickle cell disease. Indraprastha Apollo Hospital has one of the best BMT facilities in India under Dr. Gaurav Kharya, a renowned expert in pediatric bone marrow transplantation.

A Transformational Shift in Pediatric Transplant Care

The advancements in haploidentical bone marrow transplantation through Apollo Protocols have revolutionized treatment for children with thalassemia and sickle cell anemia. By reducing transplant risks, improving survival rates, and expanding access to potentially curative therapy, Apollo Hospitals is bringing new hope to families worldwide. As more children benefit from these innovations, haplo-BMT is becoming a gold-standard approach for high-risk blood disorders.

For families exploring bone marrow transplant options for their child, Apollo Hospitals’ expertise in haploidentical BMT offers a highly promising pathway toward a cure. Stay informed about the latest BMT breakthroughs and Apollo’s contributions to pediatric transplant care by following updates from India’s leading hematology and transplant centers.

[drgauravkharya]

Revolutionizing B-Cell Leukemia Treatment: How Cellogen Therapeutics’ 3rd-Generation CAR-T Cell Therapy Offers New Hope

In recent years, CAR-T cell therapy for B-cell leukemia has emerged as a groundbreaking treatment. While earlier generations of CAR-T therapy have demonstrated remarkable success, challenges such as therapy resistance, durability of response, and toxicity have led to the need for advanced innovations. Cellogen Therapeutics, a leader in gene therapy and CAR-T cell research, is pioneering the development of 3rd-generation CAR-T cell therapy, an evolution that promises greater efficacy, enhanced safety, and long-lasting remission for B-cell leukemia patients.

What is CAR-T Cell Therapy?

Chimeric Antigen Receptor T-cell (CAR-T) therapy is an advanced form of cancer immunotherapy where a patient’s T cells are genetically modified to better recognize and destroy cancerous B cells. The treatment works by engineering T cells to express synthetic receptors (CARs) that specifically target CD19, a protein commonly found on malignant B cells. Once infused back into the patient, these engineered CAR-T cells actively seek out and eliminate cancer cells.

How 3rd-Generation CAR-T Cells Are Transforming B-Cell Leukemia Treatment

The evolution of CAR-T therapy for leukemia has progressed through multiple generations, each improving upon the previous one. The 3rd-generation CAR-T cell therapy developed by Cellogen Therapeutics incorporates advanced co-stimulatory domains that significantly enhance T-cell activation, persistence, and overall therapeutic potency.

Key Benefits of 3rd-Generation CAR-T Therapy:

Enhanced T-Cell Persistence: The incorporation of multiple co-stimulatory molecules, such as CD28, 4-1BB, and OX40, boosts the survival and longevity of CAR-T cells, reducing the likelihood of relapse.

Greater Anti-Tumor Activity: The improved signaling pathways lead to stronger and more sustained tumor-killing effects, offering deeper and more durable remissions for B-cell leukemia patients.

Reduced Toxicity & Cytokine Release Syndrome (CRS): One of the primary concerns with traditional CAR-T therapy has been severe immune-related side effects. Cellogen Therapeutics’ CAR-T therapy includes modifications that help in better controlling cytokine release, thereby minimizing the risk of life-threatening complications.

Overcoming Tumor Escape Mechanisms: Cancer cells often develop resistance by downregulating CD19 expression, making them invisible to previous CAR-T generations. The 3rd-generation CAR-T cells are engineered with dual-targeting capabilities, ensuring that even CD19-negative leukemia cells can be effectively eliminated.

Why 3rd-Generation CAR-T Therapy is a Game-Changer for B-Cell Leukemia Patients

For patients diagnosed with relapsed or refractory B-cell leukemia, treatment options have historically been limited. While traditional chemotherapy and stem cell transplants remain viable, they come with significant risks and lower success rates in resistant cases. The introduction of advanced CAR-T therapy for leukemia offers new hope by:

Increasing long-term remission rates, reducing the chances of relapse.

Offering a potentially curative option where previous treatments have failed.

Providing a safer alternative with better-managed side effects.

Expanding eligibility to patients who may not have responded to earlier CAR-T therapies.

Cellogen Therapeutics: Pioneering the Future of CAR-T Therapy

As the field of immuno-oncology advances, Cellogen Therapeutics continues to drive innovation with its cutting-edge gene manipulation techniques and next-generation CAR-T cell therapy. Ongoing clinical trials for CAR-T therapy and research efforts are aimed at further refining this therapy, making it more accessible and affordable for a larger patient population.

The coming years hold immense promise for B-cell leukemia patients. With 3rd-generation CAR-T cell therapy, Cellogen Therapeutics is not just offering a treatment—it is paving the way for a transformative shift in cancer care, bringing us closer to a world where leukemia treatment is safer, more effective, and potentially curative.

With the continuous evolution of CAR-T cell therapy, the future of B-cell leukemia treatment is brighter than ever. Cellogen Therapeutics’ 3rd-generation CAR-T cell therapy represents a major leap forward in both efficacy and safety, ensuring that more patients can achieve lasting remission. As CAR-T clinical trials progress, this innovative leukemia treatment could redefine the standard of care, offering renewed hope to patients and their families.

If you or a loved one is seeking advanced treatment for B-cell leukemia, stay updated on the latest CAR-T therapy breakthroughs with Cellogen Therapeutics. The future of cancer treatment is here!

[drgauravkharya]

Best bone marrow transplant in India – Patient Success Stories

Recovery from a bone marrow transplant is a marathon, not a sprint

By : Dr. Gaurav Kharya

Bone marrow transplant has emerged as a reliable treatment option for millions of children suffering from blood disorders such as sickle cell anemia, thalassemia, aplastic anemia, leukemia, among others. Thanks to advancements in technology and medications, the success rate of bone marrow transplants has also improved dramatically over the years.

Performing a bone marrow transplant requires careful planning and strategizing, as every patient is different and responds to it differently. Recovering from a bone marrow transplant (BMT) is a gradual process and has its own set of challenges. It requires careful management, monitoring and a strong support system.

The body undergoes significant stress during the transplant process. Patients who require a bone marrow transplant are already suffering from a serious disease, which has weakened their body systems. However, there are strategies and best practices that can help speed up recovery and improve overall well-being.

1. Follow your doctor's advice

Listen to your doctor and take note of every minor and major piece of advice he/she gives. This includes taking prescribed medications, attending follow-up appointments, and undergoing any recommended tests. Your doctors will monitor your blood counts, organ function, and overall health to ensure that your body is healing properly.

2. Eat nutritious food

Good nutrition plays a crucial role in healing your body. After a BMT, your body needs a well-balanced diet rich in vitamins, minerals, and proteins to rebuild strength and boost the immune system. Your dietitian will help you with a meal plan that supports your recovery. Some patients may have special dietary needs, so it is important to avoid foods that can increase the risk of infection or gastrointestinal issues.

3. Stay hydrated

Adequate hydration is essential for maintaining kidney function and overall health. Drinking plenty of fluids helps to flush out toxins from your body and supports the functioning of your organs. Ask your doctor or dietitian, who may recommend specific types of fluids or set limits on your fluid intake.

4. Rest

Fatigue is a common side effect after a bone marrow transplant. It can be persistent and overwhelming, but managing it is key to a smoother recovery. It is important to strike a balance between rest and gentle physical activity. Increase your activity levels gradually under the supervision of your healthcare team.

5. Prevent infections

Remember, your immune system is weak after the transplant, making you more susceptible to infections. So, practicing good hygiene, avoiding crowds, and staying away from people who are sick is important during the recovery period. One should also avoid eating outside food. Homemade, hygienically-prepared food is best for you during your recovery period.

6. Be positive and patient

The recovery process can be mentally and emotionally challenging. It is normal to experience a range of emotions, from anxiety and depression to frustration and fear. Maintaining a positive outlook and being patient are important. It is important to seek medical advice if you are experiencing overwhelming emotions that are disturbing your daily routine.

Recovery from a bone marrow transplant is a marathon, not a sprint. Celebrate small milestones along the way, and remember that it is okay to have setbacks.

Dr Kharya is Director, Department of Bone Marrow Transplant and Cellular Therapy, Indraprastha Apollo Hospital, New Delhi

[drgauravkharya]

Best Pediatric Hematologist-Oncologist in Delhi, India

[drgauravkharya]

हमारी बेटी के दो जन्मदिन, एक डॉक्टर का दिया अनमोल उपहार

write by : अमित माहतो

हमारी बेटी के दो जन्मदिन, एक डॉक्टर का दिया अनमोल उपहार

जब मेरी बेटी दिक्षिता केवल छह महीने की थी, तब हमने पहली बार सुना कि उसे थैलेसीमिया है। वह बहुत ज़्यादा पीली दिखती थी और हर 15 दिन में उसे रक्त चढ़ाने की ज़रूरत पड़ती थी। डॉक्टरों ने जब कहा कि यह जीवनभर चलता रहेगा, तो हमारी दुनिया मानो ठहर गई।

इसी बीच, हमें किसी ने बोन मैरो ट्रांसप्लांट के बारे में बताया। हमें पता चला कि वेल्लोर में इसका इलाज संभव है। दिल में उम्मीद लेकर हम वहाँ पहुँचे, लेकिन हमारी खुशियाँ तब बिखर गईं जब डॉक्टरों ने कहा कि 100% मैच न मिलने के कारण वे ट्रांसप्लांट नहीं कर सकते।

हम टूट चुके थे। उम्मीद और निराशा के बीच झूलते हुए, हम सोच रहे थे कि अब क्या किया जाए। हमें ऐसा लग रहा था मानो हमारे पास कोई रास्ता ही नहीं बचा।

फिर एक दिन हमने एक सेमिनार में डॉ. गौरव खरया को सुना। उन्होंने बताया कि 50% मैच वाले ट्रांसप्लांट में भी अच्छे परिणाम मिल सकते हैं। हमें यह सुनकर उम्मीद की एक नई किरण दिखाई दी। यह ट्रांसप्लांट माता-पिता या भाई-बहन में से किसी के बोन मैरो दान (डोनेशन) से किया जा सकता था। हम दिक्षिता को दिल्ली लेकर आए और पूरा परिवार उसके साथ आया, क्योंकि यह सफर अकेले तय करना मुमकिन नहीं था।

इलाज की लागत हमारे लिए सबसे बड़ी चुनौती थी। इतनी बड़ी रकम हम एक साथ नहीं जुटा सकते थे। लेकिन हम रुके नहीं। हमने अपनी बचत निकाली, रिश्तेदारों से मदद मांगी, सामाजिक संगठनों से संपर्क किया और एक साल के संघर्ष के बाद हमने इलाज के लिए जरूरी रकम इकट्ठी कर ली। यह आसान नहीं था, लेकिन अपनी बेटी के लिए हम कुछ भी करने को तैयार थे।

ट्रांसप्लांट का सफर बेहद कठिन था। कई महीनों तक हमें अपनी बेटी को बाहरी संक्रमणों से बचाने के लिए विशेष सावधानियाँ बरतनी पड़ीं। ��सका इम्यून सिस्टम कमजोर था और छोटी सी लापरवाही भी बड़ी मुसीबत बन सकती थी। हर दिन एक परीक्षा की तरह था, लेकिन हम डटे रहे। हमें अपनी बेटी की ज़िंदगी बचानी थी।

हम हर साल दो जन्मदिन मनाते हैं। एक 25 अप्रैल को, जब वह इस दुनिया में आई थी, और दूसरा 21 मार्च को, जिस दिन उसका बोन मैरो ट्रांसप्लांट हुआ था। यह दिन हमारे लिए किसी उत्सव से कम नहीं होता, क्योंकि इस दिन हमारी बेटी को नया जीवन मिला था। यह हमारे डॉक्टर का दिया हुआ सबसे बड़ा तोहफा है।

अगर आप भी किसी ऐसे परिवार को जानते हैं जो थैलेसीमिया से जूझ रहा है, तो उन्हें हौसला दें। आज चिकित्सा विज्ञान ने इतनी तरक्की कर ली है कि 50% मैच ट्रांसप्लांट भी सफलता दिला सकता है। सही जानकारी और हिम्मत से नामुमकिन भी मुमकिन हो सकता है।

हमारी बेटी की जिंदगी अब हमारी जीत की कहानी है — प्यार, धैर्य और उम्मीद की जीत।

“ब्लॉग में साझा की गई जानकारी लेखक की व्यक्तिगत पसंद है।”

[drgauravkharya]

Best Pediatric Hematologist-Oncologist in Delhi, India

Dr. Kharya is an internationally renowned bone marrow transplant surgeon, known for his pioneering work in developing innovative protocols for haploidentical bone marrow transplants, specifically for sickle cell disease. With over two decades of experience, he holds the record for the highest number of successful bone marrow transplants for sickle cell disease in India. Over the past 7 years, Dr. Kharya has performed nearly 1000 transplants, with over 100 of them being for patients with sickle cell disease. His research has established haploidentical transplant as the preferred option for sickle cell disease and other haematological conditions when a 100 percent match is not available. Through his groundbreaking work, Dr. Kharya has achieved remarkable and promising results, solidifying his position as a leader in the field.

[drgauravkharya]

थैलेसीमिया के इलाज के लिए 10 लाख तक की सहायता – जाने कैसे!

थैलेसीमिया बाल सेवा योजना के अंतर्गत 10 लाख तक की आर्थिक मदद मिलेगी! Bone Marrow Transplant के लिए तुरंत जानकारी प्राप्त करें।

🏥💰 अगर आपका बच्चा थैलेसीमिया से पीड़ित है और बोन मैरो ट्रांसप्लांट की जरूरत है, तो यह योजना आपकी मदद कर सकती है।

भारत के शीर्ष बोन मैरो ट्रांसप्लांट विशेषज्ञों में से एक Dr. Gaurav Kharya ने 1000+ सफल ट्रांसप्लांट किए हैं, जिसमें 100+ सिकल सेल डिजीज (SCD) और थैलेसीमिया के मरीज शामिल हैं।

👉 अधिक जानकारी के लिए Dr. Gaurav Kharya की वेबसाइट पर विजिट करें: 🌍 www.gauravkharya.com

[drgauravkharya]

Dr. Gaurav Kharya offers treatment for sickle cell, thalassemia in children through Bone Marrow Transplant and Cellular Therapy.

[drgauravkharya]

Recovery from a bone marrow transplant is a marathon, not a sprint

Bone marrow transplant has emerged as a reliable treatment option for millions of children suffering from blood disorders such as sickle cell anemia, thalassemia, aplastic anemia, leukemia, among others. Thanks to advancements in technology and medications, the success rate of bone marrow transplants has also improved dramatically over the years.

Performing a bone marrow transplant requires careful planning and strategizing, as every patient is different and responds to it differently. Recovering from a bone marrow transplant (BMT) is a gradual process and has its own set of challenges. It requires careful management, monitoring and a strong support system. The body undergoes significant stress during the transplant process. Patients who require a bone marrow transplant are already suffering from a serious disease, which has weakened their body systems. However, there are strategies and best practices that can help speed up recovery and improve overall well-being. 1. Follow your doctor's advice Listen to your doctor and take note of every minor and major piece of advice he/she gives. This includes taking prescribed medications, attending follow-up appointments, and undergoing any recommended tests. Your doctors will monitor your blood counts, organ function, and overall health to ensure that your body is healing properly. 2. Eat nutritious food Good nutrition plays a crucial role in healing your body. After a BMT, your body needs a well-balanced diet rich in vitamins, minerals, and proteins to rebuild strength and boost the immune system. Your dietitian will help you with a meal plan that supports your recovery. Some patients may have special dietary needs, so it is important to avoid foods that can increase the risk of infection or gastrointestinal issues. 3. Stay hydrated Adequate hydration is essential for maintaining kidney function and overall health. Drinking plenty of fluids helps to flush out toxins from your body and supports the functioning of your organs. Ask your doctor or dietitian, who may recommend specific types of fluids or set limits on your fluid intake. 4. Rest Fatigue is a common side effect after a bone marrow transplant. It can be persistent and overwhelming, but managing it is key to a smoother recovery. It is important to strike a balance between rest and gentle physical activity. Increase your activity levels gradually under the supervision of your healthcare team. 5. Prevent infections

Remember, your immune system is weak after the transplant, making you more susceptible to infections. So, practicing good hygiene, avoiding crowds, and staying away from people who are sick is important during the recovery period. One should also avoid eating outside food. Homemade, hygienically-prepared food is best for you during your recovery period. 6. Be positive and patient The recovery process can be mentally and emotionally challenging. It is normal to experience a range of emotions, from anxiety and depression to frustration and fear. Maintaining a positive outlook and being patient are important. It is important to seek medical advice if you are experiencing overwhelming emotions that are disturbing your daily routine. Recovery from a bone marrow transplant is a marathon, not a sprint. Celebrate small milestones along the way, and remember that it is okay to have setbacks.

Dr Kharya is Director, Department of Bone Marrow Transplant and Cellular Therapy, Indraprastha Apollo Hospital, New Delhi

[drgauravkharya]

Life Beyond Sickle Cell - A story of Love, Strength, and Faith

My country, Nigeria, was recently dubbed the “sickle cell capital” of the world. It has the highest number of sickle cell disease cases globally, with an estimated 150,000 babies born with this inherited blood disorder each year. About 50,000 of these babies sadly do not make it past their 5th year. Sickle Cell disease affects the shape and function of red blood cells, transforming their normal round form into rigid, sickle shapes due to abnormal haemoglobin, and as a result, these cells cannot flow smoothly through blood vessels, depriving organs and tissues of oxygen.

In children (mostly) and adults, this causes severe and recurring episodes of pain, known as vaso-occlusive crises, and damages organs over time. Complications often begin in childhood, which include frequent infections, acute chest syndrome, and delayed growth, all of which demand constant medical attention.

Despite all this, the care and awareness of this condition at the time I was growing up was limited at best, and lacking at most.

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The 2nd of 3 brothers, I was born in June of ‘91 and diagnosed in March of ‘92, on my mum’s 30th birthday. And while I can’t speak to what went through her mind at the time, I can attest to what she made sure stayed in mine till this day. From the moment I could understand what was going on, she was crystal clear that I must define the disease and never the other way round. For a condition so widely misunderstood and incorrectly surmised, she emphasised the complete disregard of information that came from anyone without experience or expertise.

She made my health my responsibility from an early age. “Your dad and I will do everything we can, but the life you want is up to you”. I heard her loud and clear. They ensured I had access to the best possible treatment, nutrition, and care available to us, and I did my part, making sure I took my meds everyday, always stayed hydrated, and never overexerted myself as kids are prone to do.

Despite such privileged conditions, my experience with sickle cell was far from mild. I have vivid memories, countless, as a child, waking up in the middle of the night, screaming in agony, being rushed to the emergency room to be sedated with pain medication after my mother’s attempts to soothe me proved futile.

On good days, I was able to return home a few hours later with just enough pain to keep from crying. Other days turned to nights in the hospital, admitted and treated for one complication or the other. This was a recurring reality for almost three decades.

Despite a less-than-favourable outlook on the disease, I was never advised to limit myself to it.  Not by anyone who mattered, anyway. I was taught to be careful and aware of the condition and how it manifested, but more importantly, I was encouraged, by mum and dad, by my doctors, by my brothers, to live in spite of it, so I did.

As a teenager I did very well in school; I was popular; I played football; I played basketball; I loved riding bikes; I read; I danced; I rapped. Later on, I moved to the UK to attend university. I met people; I studied; I partied; I learnt things; I fell in love; I got heartbroken; I attended music festivals; I travelled; I lived.

Oftentimes I would end up in excruciating pain and in some cases, hospitalised as a direct (or indirect) result of engaging in one or more of these activities, but in those moments, with the love of friends and family, I continually chose to live - through books; through movies, and best of all, through music.

While I was busy living, universal research and development concerning (the treatment of) sickle cell disease had made significant strides. As at 2018, potentially curative stem cell transplants that once seemed a distant hope, were now happening across the world, with favourable results, and unbeknown to me, my mum, in addition to juggling a full life and a very busy career of her own, had been keeping up with the studies the entire time. Through her findings, she connected with Dr. Gaurav Kharya, the Director of the Department of Cellular Therapies and Bone Marrow Transplant at Indraprastha Apollo Hospital in New Delhi, who expressed his confidence in my eligibility and suitability despite my age at the time.

She eventually brought me and my brothers up to speed towards the end of the year, as she felt it was a chance we had to take, but ultimately, it was my decision to make. I thought about it, we talked about it, and at the beginning of 2019, in memory of my dad and the 10th remembrance of his passing, it was that will to keep living he helped instil in me that motivated us a family to go ahead with the transplant. At about that time, my mum also shared with us, a vivid dream she had of seeing a white plaque on which was written ‘Something good is about to happen’ in my dad’s distinctive scrawl, with his signature underneath. 

The HLA typing test kits sent over to the United States in December 2018 returned in early January of 2019 with the excellent news that my older brother was a 100% match and in July 2019, shortly after I turned 28, my mum and I travelled to India, where we lived for 5 months.

For the first month, I had to be tested frequently and thoroughly to give the doctor and his team a full and clear picture of what they would be working with. My brother (my donor) joined us for a few weeks at the required time for the harvesting of his stem cells. He was a real trooper throughout the harvesting process, and the doctors were able to secure more than enough stem cells for my impending transplant. He was nicknamed ‘Mr. Super Stem Cell’ by the medical team, as a result of the excellent quality of the stem cells retrieved from him. 

After Dr. Gaurav (“Doc” as I now call him) was satisfied with the state of my health, he needed my consent before proceeding, but first, he took his time to discuss all the possible risks involved - from stem cell rejection to death. I was unbothered by most of them, but the one that hit me hard was the risk of infertility.

I love children, and for as long as I have known who and what dads are, I wanted to be one. The thought of not being able to experience that someday, really hurt. Doc emphasised that it was a possibility, not a certainty, but just incase, he recommended that I freeze sperm samples before moving ahead. I did, but with a heavy heart. I spoke with my mum, with other loved ones and I was encouraged to deal with what was right in front of me and not what may or may not lie ahead. So, I eventually accepted the situation and the sacrifice that it required, and I gave the green light.

My mum and I moved into the hospital ward, a completely sealed off and isolated room for a 30-day stay and I was put on an intense regimen which included chemotherapy in order to decimate my bone marrow in a way that facilitated rebuilding with the donor cells. 

It worked. However, for a whole week, I could barely lift myself out of bed. My head had to be shaved - ahead of the hair falling off which may have been more traumatising - my hands and face had visibly dark streaks; there was blood whenever I coughed up anything, and I had a sore throat so bad I could barely drink, not to talk of eating, and yet I had to keep my nutrition level up because I had no other form of protection against infection. My immune system had been wiped out by the chemo. 

After chemotherapy came the main event; the transplant itself which was done on the 23rd of August, 2019. Asides from the prayers of the medical team and my mother prior to the start of the process itself, the transplant turned out to be the least ceremonious phase of the entire procedure. It was akin to an IV flush, albeit with a large syringe filled with stem cells. It lasted all of 90 seconds, to my surprise and my mum’s. The medical team led by the head Nurse/Matron then presented me with a birthday card dated 23rd August 2019 - signifying my 2nd ‘birth date’. 

This stem cell transplant was shortly followed by 3 sets of transfusions of blood platelets starting about a day or two later (spaced a day apart) to kick off a 30-day grafting period - the waiting period within which grafting or chimerism as it is also referred to, is expected to happen, all things working well.

For an entire month, my mom and I were isolated in a multiple-daily-disinfected room, with a round-the-clock rotation of nurses in masks and gloves to administer medication, draw blood for tests, check my weight, measure my girth (all very important for determining the medication to administer); measure my water intake against my urine output, and ensure I was diligent with my antiseptic sitz baths and throat gargles 5-6 times everyday. Those were absolutely critical. My mum had a notebook in which she recorded everything like clockwork. 

I did all I was told to do; at times reluctantly, but never with petulance. I also intentionally steered clear of any research or hearsay as I didn’t want any  information that could potentially cause me to contradict or question those who knew better.

Everything was monitored and assessed to the letter by Doc and his team, and I was given regular progress updates and encouragement till he felt confident enough that I could be released from the ward and continue my recovery as an outpatient for the next 3 months. Despite the positive forecast on the medical side, this was the most challenging phase on a personal level. It required a great deal of strength, fortitude, faith, patience, self-awareness, and day-dreaming to bear the physical, mental, and emotional weight brought on by the process. This was a rebirth and growing pains were part of the deal, not just for me but also for my mum who in her own way as a mother was experiencing the same ordeal.

I found clarity, comfort, and courage through journaling, meditating, drawing, Bible sermons, friends & family, my mum, and most of all, music. I can’t prove it, but I can confidently say that without the joy of music, this would be a completely different story; or there’d be no story at all. My love of and for music assures me of God’s love. It always has. All things considered, it’s an assurance I don’t need, but one I have anyway, and that’s what I cherish most about it.

That love and all the ways it manifests was a sustaining force those 5 months, through the good, the bad, the ugly, and eventually to the beautiful. At the start of December 2019, Doc confirmed the new stem cells were in full effect and my genotype was no longer SS, but now AS. Much to his palpable delight, the success of the procedure had exceeded his own expectations. It was nothing short of a miracle.

My mum and I returned to Lagos just in time for the festive holidays, after a week’s stopover in Dubai to decompress; joined by my other brother who had anxiously remained in the UK all through our Indian sojourn. We had so much to be thankful for as a family. Yes, I still had a year of progressive recovery ahead of me, but we were working with a new level of strength and faith, so the testimony was only ever going to get better, and in the 5 years since then, it has undoubtedly gotten better.

The 2020 pandemic served as an unwanted and unwelcome extension to the medical seclusion I experienced in India, but I chose to make the best of it. I took the time to learn music theory and teach myself to play the piano. I decided I was going to bet on that love for music, and I did. In June of 2021, a few days shy of my 30th birthday, I auditioned for the IMEP Paris College of Music in France and was accepted to study Jazz piano and performance. This added another highlight to what had already been quite the story so far. I was over the moon.

In March 2021 accompanied by my mum, I went back to India for the first in-person check up since leaving in December 2019. All seemed well. Fast forward  few months and as my immune system adapted to the new cells, I suffered a case of chronic graft-versus-host disease (GVHD), a common post-transplant complication which affected my eyes, skin, and joints (shoulders and knees). The severity, albeit relatively mild, required an urgent return to India in July 2021, where I was treated by Doc and his team for 2 weeks. This new regimen consisted mostly of corticosteroids, and I was assured that it was simply a setback, not a reversal. With proper care and consideration, the symptoms would improve and eventually resolve over time. I trusted Doc and though these additional challenges were not welcome, I accepted them as chapters still being written.

I recently returned to India, just over 3 years after the last visit, in celebration of my 5th year post-transplant. My GVHD symptoms have all improved significantly, and I wanted a full medical assessment of my progress so far. Doc prescribed the usual blood tests for liver/kidney functions, a full hormone panel, and sperm analysis. I had to relive the anxiety of 5 years ago when I was initially informed of the possibility of infertility. However, I was working with a new level of faith now. I was a sickle cell patient in July 2019, but not anymore! A recurring reminder of what can happen when you are brave enough, despite fear and uncertainty, to go ahead, leaving just enough room for miracles.

The tests came back with excellent numbers, and my fertility was not only preserved, but improved. I was speechless. Doc was visibly over the moon. He revealed to me that he had planned my treatment carefully to protect this aspect of my future; information I was not aware of at the time. I didn’t need to be. I just needed to believe and trust that there was more to this story yet unfolding.

Everyday I wake up is the healthiest I’ve ever been. Not once in 5 years have I had to worry about or deal with a pain crisis. That alone would be a worthy summation of the journey so far, but in addition to that, I have also completed 3 years of music school in Paris finishing with a Distinction. I have performed with bands on campus and at various venues. I have been named by the European Recording Orchestra as ‘one of the top emerging composers in 2023’.  I have conducted a symphony orchestra in a formal concert in Bulgaria. I have travelled the world, learnt new things, met wonderful people, including The Bhaskars who are now the Indian extension of my family.  And I have done all of this with an openness and an appreciation of a life renewed by the transplant.

As a young boy growing up in Nigeria, I could never have imagined this reality, this story. I hope it inspires and encourages many - those dealing with this blood disorder, their families, loved ones and those who are truly invested in providing the care and succour badly needed. I hope it challenges the leadership of Nigeria at the highest level, and to our numerous philanthropists to commit more to tackling this public health issue very decidedly. More work needs to be done on a national level regarding the administrative, medical, and personal concerns and demands of sickle cell disease in the country.

I have been inexplicably favoured in my life, and I write this with a profound and immense sense of gratitude. What once seemed a burden has become my privilege, and with that, a strong sense of responsibility to be of service to those equally afflicted, but less fortunate. The Sickle Cell Foundation of Nigeria, which my mum has recently been appointed a member of the Board of Directors, has renewed its commitment to improving and maintaining a system that fully supports the needs of patients and their loved ones, and I hope to be an active part of this effort as a counsellor to, and an advocate for those who need it the most. I cannot think of a more worthy way to give back than to help in my own little way, to keep my story going by making it a more familiar one.