Health and Me

Ishita Roy

Over 70 Million Indians Affected By Rare Diseases Amid Ongoing Challenges

<span>Rare diseases</span>—also called orphan diseases—may affect only a small fraction of the population individually, but collectively they pose a massive public health challenge in India. According to estimates from the Foundation for Research on Rare Diseases and <span>Disorders</span>, over 70 million Indians are living with rare genetic conditions. Despite their growing prevalence, patients continue to struggle with limited diagnosis, inadequate treatment options, and high out-of-pocket expenses.

A disease is considered rare in India if it affects fewer than one in 2,500 individuals. Globally, more than 7,000 rare diseases have been identified, most of which are genetic and often life-threatening. In the Indian context, conditions like Gaucher’s disease, Duchenne muscular dystrophy, and various lysosomal storage disorders are among the most commonly reported.

<h4>Key Challenges Facing Rare Disease Patients</h4>

One of the most significant hurdles is the lack of awareness and proper diagnostic infrastructure. With overlapping symptoms such as fatigue, muscle weakness, neurological disturbances, and gastrointestinal issues, rare diseases are often misdiagnosed or go undetected for years. This diagnostic delay not only worsens the patient’s condition but can also lead to unnecessary treatments and mounting expenses.

Rare diseases typically require long-term and highly specialized care. Therapies like enzyme replacement can cost several lakhs annually, placing a heavy burden on families. Unfortunately, these treatments are often not covered under standard health insurance policies in India.

The absence of a national registry for rare diseases makes it difficult to accurately track the disease burden or develop targeted interventions. Moreover, limited research funding hampers the development of new treatments, especially when pharmaceutical companies see little commercial incentive to invest in conditions affecting small patient groups.

<h4>Insufficient Infrastructure and Trained Personnel</h4>

The number of healthcare professionals trained to handle rare diseases remains low. Specialized diagnostic centres and treatment facilities are sparse, especially in rural and semi-urban areas, resulting in inequitable access to care.

<h4>Policy Responses and Emerging Solutions</h4>

<h5>National Policy for Rare Diseases (NPRD) 2021</h5>

In an effort to streamline care and provide financial assistance, the Indian government introduced the NPRD in 2021. The policy classifies rare diseases into three categories—those that need one-time curative treatment, those requiring long-term therapies, and conditions where definitive treatment is still under research. Under the Rashtriya Arogya Nidhi scheme, financial assistance of up to ₹50 lakh is provided for specific conditions listed in the policy.

<h5>Encouraging Domestic Drug Manufacturing</h5>

To tackle the high costs of imported orphan drugs, the government has been encouraging domestic pharmaceutical companies to manufacture these treatments locally. Incentives, including tax benefits and research grants, are being explored to promote affordable drug development.

<h5>Newborn Screening and Early Detection</h5>

Recognizing the importance of early intervention, efforts are underway to expand newborn screening programs across India. Early diagnosis not only improves survival rates but also reduces the long-term cost and complexity of treatment.

<h5>Strengthening Public-Private Collaborations</h5>

Partnerships among government bodies, research institutions, and private companies are being promoted to advance rare disease research. Initiatives like the ICMR’s Rare Disease Registry aim to generate epidemiological data and facilitate better planning and resource allocation.

While recent policy measures have been a step in the right direction, much remains to be done. Strengthening financial support, expanding insurance coverage, increasing public awareness, and scaling up research and diagnostic capabilities are critical to improving the lives of those affected by <span>rare diseases in India</span>.

With sustained efforts and inclusive healthcare planning, the country can move toward a future where rare disease patients are no longer sidelined, but receive timely, equitable, and effective care.

Health Conditions A-Z

health

rare diseases

disorders

health and wellness

india rare disease cases

rare diseases in india

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Rare diseases—also called orphan diseases—may affect only a small fraction of the population individually, but collectively they pose a massive public health challenge in India. According to estimates from the Foundation for Research on Rare Diseases and Disorders, over 70 million Indians are living with rare genetic conditions. Despite their growing prevalence, patients continue to struggle with limited diagnosis, inadequate treatment options, and high out-of-pocket expenses.A disease is considered rare in India if it affects fewer than one in 2,500 individuals. Globally, more than 7,000 rare diseases have been identified, most of which are genetic and often life-threatening. In the Indian context, conditions like Gaucher’s disease, Duchenne muscular dystrophy, and various lysosomal storage disorders are among the most commonly reported.Key Challenges Facing Rare Disease PatientsDelayed or Missed DiagnosisOne of the most significant hurdles is the lack of awareness and proper diagnostic infrastructure. With overlapping symptoms such as fatigue, muscle weakness, neurological disturbances, and gastrointestinal issues, rare diseases are often misdiagnosed or go undetected for years. This diagnostic delay not only worsens the patient’s condition but can also lead to unnecessary treatments and mounting expenses.High Cost of TreatmentRare diseases typically require long-term and highly specialized care. Therapies like enzyme replacement can cost several lakhs annually, placing a heavy burden on families. Unfortunately, these treatments are often not covered under standard health insurance policies in India.Limited Data and ResearchThe absence of a national registry for rare diseases makes it difficult to accurately track the disease burden or develop targeted interventions. Moreover, limited research funding hampers the development of new treatments, especially when pharmaceutical companies see little commercial incentive to invest in conditions affecting small patient groups.Insufficient Infrastructure and Trained PersonnelThe number of healthcare professionals trained to handle rare diseases remains low. Specialized diagnostic centres and treatment facilities are sparse, especially in rural and semi-urban areas, resulting in inequitable access to care.Policy Responses and Emerging SolutionsNational Policy for Rare Diseases (NPRD) 2021In an effort to streamline care and provide financial assistance, the Indian government introduced the NPRD in 2021. The policy classifies rare diseases into three categories—those that need one-time curative treatment, those requiring long-term therapies, and conditions where definitive treatment is still under research. Under the Rashtriya Arogya Nidhi scheme, financial assistance of up to ₹50 lakh is provided for specific conditions listed in the policy.Encouraging Domestic Drug ManufacturingTo tackle the high costs of imported orphan drugs, the government has been encouraging domestic pharmaceutical companies to manufacture these treatments locally. Incentives, including tax benefits and research grants, are being explored to promote affordable drug development.Newborn Screening and Early DetectionRecognizing the importance of early intervention, efforts are underway to expand newborn screening programs across India. Early diagnosis not only improves survival rates but also reduces the long-term cost and complexity of treatment.Strengthening Public-Private CollaborationsPartnerships among government bodies, research institutions, and private companies are being promoted to advance rare disease research. Initiatives like the ICMR’s Rare Disease Registry aim to generate epidemiological data and facilitate better planning and resource allocation.While recent policy measures have been a step in the right direction, much remains to be done. Strengthening financial support, expanding insurance coverage, increasing public awareness, and scaling up research and diagnostic capabilities are critical to improving the lives of those affected by rare diseases in India.With sustained efforts and inclusive healthcare planning, the country can move toward a future where rare disease patients are no longer sidelined, but receive timely, equitable, and effective care.

over 70 million indians affected by rare diseases amid ongoing challenges

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Vaccination is one of the earliest forms of medical protection given to children. However, many vaccines are typically administered during infancy and early childhood, with fewer continuing into adolescence. Among the most crucial yet often overlooked vaccines is the <span>Human Papillomavirus</span> (<span>HPV</span>) vaccine, recommended from the age of 9. Health professionals emphasize that this vaccine plays a vital role in preventing multiple serious diseases, including certain cancers, making it an essential step in adolescent healthcare.

<h4>What is HPV and How is it Spread?</h4>

Human Papillomavirus (HPV) is a common viral infection, primarily spread through skin-to-skin contact during sexual activity. While many HPV infections clear on their own, some strains can persist and lead to severe health conditions. These include cervical cancer, genital warts, and cancers of the throat, anus, penis, vagina, and vulva. Because HPV can affect both men and women, vaccination is recommended for all children—regardless of gender—before any potential exposure.

Starting the <span>HPV vaccine</span> early, ideally at age 9, ensures long-term protection. At this age, the immune system responds more robustly to the vaccine, producing stronger and longer-lasting immunity. Vaccinating before any sexual contact begins offers the best possible defense against HPV infection and the related health complications that may develop years later.

The HPV vaccine is approved and recommended for:

<ul><li>Girls aged 9 to 45 years</li><li>Boys aged 9 to 26 years</li></ul>

For children between 9 and 14 years old, two doses of the vaccine are generally sufficient, administered several months apart. However, individuals aged 15 and above require three doses for full protection. Even if the vaccine is missed at age 9, catch-up vaccinations are available up to age 26, and in some cases beyond, depending on medical advice.

<strong>Prevention before exposure:</strong> The vaccine works best when administered before any sexual activity begins.

<strong>Long-term immunity: </strong>Early vaccination builds strong protection that lasts for years.

<strong>Cancer prevention:</strong> It significantly reduces the risk of cervical cancer and other HPV-related cancers in both men and women.

<strong>Protection from genital warts:</strong> Prevents the development of genital warts caused by certain HPV strains.

<strong>Safe and effective:</strong> The vaccine is well-tested, safe, and has minimal side effects, making it a reliable preventive measure.

<h4>Diseases Prevented by the HPV Vaccine</h4>

<ul><li>Cervical cancer</li><li>Vaginal and vulvar cancer</li><li>Anal cancer</li><li>Throat (oropharyngeal) cancer</li><li>Penile cancer</li><li>Genital warts</li></ul>

While the HPV vaccine is highly effective, additional steps can help reduce the risk of infection:

<ul><li>Avoid unsafe or unprotected skin-to-skin contact</li><li>Practice good personal hygiene</li><li>Educate children and adolescents about health, hygiene, and safe practices</li><li>Encourage regular medical check-ups, including Pap tests for women when appropriate</li></ul>

HPV Vaccine at 9

HPV Vaccine

Human Papillomavirus

Vaccination is one of the earliest forms of medical protection given to children. However, many vaccines are typically administered during infancy and early childhood, with fewer continuing into adolescence. Among the most crucial yet often overlooked vaccines is the Human Papillomavirus (HPV) vaccine, recommended from the age of 9. Health professionals emphasize that this vaccine plays a vital role in preventing multiple serious diseases, including certain cancers, making it an essential step in adolescent healthcare.What is HPV and How is it Spread?Human Papillomavirus (HPV) is a common viral infection, primarily spread through skin-to-skin contact during sexual activity. While many HPV infections clear on their own, some strains can persist and lead to severe health conditions. These include cervical cancer, genital warts, and cancers of the throat, anus, penis, vagina, and vulva. Because HPV can affect both men and women, vaccination is recommended for all children—regardless of gender—before any potential exposure.Why Start Vaccination at Age 9?Starting the HPV vaccine early, ideally at age 9, ensures long-term protection. At this age, the immune system responds more robustly to the vaccine, producing stronger and longer-lasting immunity. Vaccinating before any sexual contact begins offers the best possible defense against HPV infection and the related health complications that may develop years later.Who Should Get the HPV Vaccine?The HPV vaccine is approved and recommended for:Girls aged 9 to 45 yearsBoys aged 9 to 26 yearsFor children between 9 and 14 years old, two doses of the vaccine are generally sufficient, administered several months apart. However, individuals aged 15 and above require three doses for full protection. Even if the vaccine is missed at age 9, catch-up vaccinations are available up to age 26, and in some cases beyond, depending on medical advice.Key Benefits of the HPV VaccinePrevention before exposure: The vaccine works best when administered before any sexual activity begins.Long-term immunity: Early vaccination builds strong protection that lasts for years.Cancer prevention: It significantly reduces the risk of cervical cancer and other HPV-related cancers in both men and women.Protection from genital warts: Prevents the development of genital warts caused by certain HPV strains.Safe and effective: The vaccine is well-tested, safe, and has minimal side effects, making it a reliable preventive measure.Diseases Prevented by the HPV VaccineCervical cancerVaginal and vulvar cancerAnal cancerThroat (oropharyngeal) cancerPenile cancerGenital wartsPrevention Beyond VaccinationWhile the HPV vaccine is highly effective, additional steps can help reduce the risk of infection:Avoid unsafe or unprotected skin-to-skin contactPractice good personal hygieneEducate children and adolescents about health, hygiene, and safe practicesEncourage regular medical check-ups, including Pap tests for women when appropriate

why experts recommend the hpv vaccine for children starting at 9

Tanya Dutt

Better Than Botox! Turn Back The Clock On Your Skin With This Common Vitamin

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Slowing Biological Aging May Be Possible Through This Blood Therapy: Study

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Vitamin C has long been hailed as a powerhouse nutrient. It's the go-to supplement for colds, known for boosting immunity and fighting scurvy. But now, scientists are discovering a game-changing role for this essential vitamin: reactivating "dormant" genes to rejuvenate aging skin.

A team led by Dr. Akihito Ishigami at the Tokyo Metropolitan Institute for Geriatrics and Gerontology has uncovered how vitamin C triggers skin cell proliferation by initiating <span>DNA demethylation</span>. This process essentially "turns on" genes responsible for cellular growth in the skin, resulting in thicker, healthier, and more youthful-looking skin.

This pioneering study, appearing in the Journal of Investigative Dermatology, utilized a 3D human skin model to mimic what happens when vitamin C (VC) is introduced at concentrations approximating that which occurs naturally in the bloodstream. On day seven, the epidermis of the skin started to thicken, and on day 14, scientists detected a remarkable rise in living skin cells tagged with Ki-67—a recognized protein marker for active cell proliferation.

Imagine that DNA demethylation is like turning on a switch for your genes. There are "tags," or methyl groups, on our genes that can turn gene function off or on. In skin cells, these tags will keep new, healthy cells from being made. Vitamin C removes these tags, especially from keratinocyte genes—the same cells that help create your epidermis. This promotes cell production and, in the end, thicker skin.

Notably, keratinocytes start life well inside the skin and make their way upward to create its protective outer layer. Stimulating their growth not only strengthens the skin barrier but may even reverse the outward signs of aging, including thinning and sag.

The research discovered that intracellular VC uptake enhanced epidermal thickening, activated <span>keratinocyte proliferation</span>, and increased global 5-hydroxymethylcytosine DNA levels, a sign of active demethylation. When researchers applied an inhibitor of the TET enzyme, the enzyme that demethylates DNA, these effects vanished, further supporting VC's central role in initiating the process.

Gene sequencing also found that 12 cell growth and proliferation genes were highly expressed with VC. The discovery can be a significant breakthrough in dermatological science, particularly in treating thinning skin in the elderly.

<h2>Limitations of Classical Vitamin C Delivery</h2>

Vitamin C does not readily penetrate the lower layers of skin when swallowed or put directly onto it. The natural skin barrier prevents nutrients from penetrating deeply enough to induce gene-level changes. While vitamin C serums provide antioxidant protection and brighten the complexion, they might not be strong enough to induce gene expression unless more specific delivery systems are used.

Scientists think the future of VC lies in new delivery systems, like injectables or transdermal patches that are designed to deliver VC into the basal epidermal layers. Any potential therapy would necessarily be localized to prevent systemic effects that might compete with other functions in the body.

Outside of this new genetic mechanism, vitamin C does a number of important jobs in keeping the skin healthy:

<ul><li>It maintains <span rel="noindex">collagen production</span>, which enhances skin firmness and elasticity.</li><li>It fights free radical damage from UV exposure.</li><li>It keeps the skin barrier intact and alleviates inflammation.</li></ul>

Interestingly, healthy skin has high levels of vitamin C, but they decrease with age and sun exposure. So, dietary intake becomes all the more crucial for skin health.

<h2>Foods that are rich in Vitamin C</h2>Obtaining a sufficient amount of vitamin C from food is usually effective in ensuring healthy skin. Some of the richest sources are:

<ul><li>Red and green peppers</li><li>Orange and grapefruit citrus fruits</li><li>Kiwifruit</li><li>Broccoli</li><li>Strawberries</li></ul>

All these foods not only provide vitamin C but also fiber, antioxidants, and other health-promoting nutrients.

While this research targeted internal vitamin C absorption, dermatologists are in accord that topical use is still valid. VC serums are used extensively for their antioxidant properties and brightening of skin color and reduction of hyperpigmentation. Their penetration is restricted, though, versus what could be required to induce gene-level responses.

Topical vitamin C is still effective, nonetheless, as a complement to a nutrient-dense diet, offering a multi-layered regimen of skin maintenance.

As we get older, our skin naturally thins, loses its elasticity, and is more likely to be damaged. Up until this point, most anti-aging therapies have aimed at topical or surface therapies. With this latest study, for the first time, the potential for reprogramming skin cells at the genetic level exists—not merely covering up the effects of aging but actually reversing them.

Dr. Ishigami and his researchers hope the results will lay the ground for new therapies, particularly for frail older adults with thinning skin. "VC promotes thickening of the skin by inducing proliferation of keratinocytes via DNA demethylation and so is a potential therapy for thinning skin," he explained.

While additional research and development are required prior to VC-based genetic therapies becoming the norm, this research gives a glimpse of the future of dermatology. By reverting "dormant" genes to a functional state, vitamin C could be a frontline player in regenerative skin therapy.

So, if you're already sprinkling VC into your smoothies or using it in your skincare routine, science is revealing there's a lot more to this unassuming vitamin than we ever thought.

Skin & Hair

vitamin c for skin

dna demethylation

aging skin treatment

keratinocyte proliferation

collagen production

skin regeneration

epidermal thickness

Vitamin C has long been hailed as a powerhouse nutrient. It's the go-to supplement for colds, known for boosting immunity and fighting scurvy. But now, scientists are discovering a game-changing role for this essential vitamin: reactivating "dormant" genes to rejuvenate aging skin.A team led by Dr. Akihito Ishigami at the Tokyo Metropolitan Institute for Geriatrics and Gerontology has uncovered how vitamin C triggers skin cell proliferation by initiating DNA demethylation. This process essentially "turns on" genes responsible for cellular growth in the skin, resulting in thicker, healthier, and more youthful-looking skin.This pioneering study, appearing in the Journal of Investigative Dermatology, utilized a 3D human skin model to mimic what happens when vitamin C (VC) is introduced at concentrations approximating that which occurs naturally in the bloodstream. On day seven, the epidermis of the skin started to thicken, and on day 14, scientists detected a remarkable rise in living skin cells tagged with Ki-67—a recognized protein marker for active cell proliferation.How DNA Demethylation Works?Imagine that DNA demethylation is like turning on a switch for your genes. There are "tags," or methyl groups, on our genes that can turn gene function off or on. In skin cells, these tags will keep new, healthy cells from being made. Vitamin C removes these tags, especially from keratinocyte genes—the same cells that help create your epidermis. This promotes cell production and, in the end, thicker skin.Notably, keratinocytes start life well inside the skin and make their way upward to create its protective outer layer. Stimulating their growth not only strengthens the skin barrier but may even reverse the outward signs of aging, including thinning and sag.The research discovered that intracellular VC uptake enhanced epidermal thickening, activated keratinocyte proliferation, and increased global 5-hydroxymethylcytosine DNA levels, a sign of active demethylation. When researchers applied an inhibitor of the TET enzyme, the enzyme that demethylates DNA, these effects vanished, further supporting VC's central role in initiating the process.Gene sequencing also found that 12 cell growth and proliferation genes were highly expressed with VC. The discovery can be a significant breakthrough in dermatological science, particularly in treating thinning skin in the elderly.Limitations of Classical Vitamin C DeliveryVitamin C does not readily penetrate the lower layers of skin when swallowed or put directly onto it. The natural skin barrier prevents nutrients from penetrating deeply enough to induce gene-level changes. While vitamin C serums provide antioxidant protection and brighten the complexion, they might not be strong enough to induce gene expression unless more specific delivery systems are used.Scientists think the future of VC lies in new delivery systems, like injectables or transdermal patches that are designed to deliver VC into the basal epidermal layers. Any potential therapy would necessarily be localized to prevent systemic effects that might compete with other functions in the body.Outside of this new genetic mechanism, vitamin C does a number of important jobs in keeping the skin healthy:It maintains collagen production, which enhances skin firmness and elasticity.It fights free radical damage from UV exposure.It keeps the skin barrier intact and alleviates inflammation.Interestingly, healthy skin has high levels of vitamin C, but they decrease with age and sun exposure. So, dietary intake becomes all the more crucial for skin health.Foods that are rich in Vitamin CObtaining a sufficient amount of vitamin C from food is usually effective in ensuring healthy skin. Some of the richest sources are:Red and green peppersOrange and grapefruit citrus fruitsKiwifruitBroccoliStrawberriesAll these foods not only provide vitamin C but also fiber, antioxidants, and other health-promoting nutrients.What About Vitamin C Serums?While this research targeted internal vitamin C absorption, dermatologists are in accord that topical use is still valid. VC serums are used extensively for their antioxidant properties and brightening of skin color and reduction of hyperpigmentation. Their penetration is restricted, though, versus what could be required to induce gene-level responses.Topical vitamin C is still effective, nonetheless, as a complement to a nutrient-dense diet, offering a multi-layered regimen of skin maintenance.Why This Is Important?As we get older, our skin naturally thins, loses its elasticity, and is more likely to be damaged. Up until this point, most anti-aging therapies have aimed at topical or surface therapies. With this latest study, for the first time, the potential for reprogramming skin cells at the genetic level exists—not merely covering up the effects of aging but actually reversing them.Dr. Ishigami and his researchers hope the results will lay the ground for new therapies, particularly for frail older adults with thinning skin. "VC promotes thickening of the skin by inducing proliferation of keratinocytes via DNA demethylation and so is a potential therapy for thinning skin," he explained.While additional research and development are required prior to VC-based genetic therapies becoming the norm, this research gives a glimpse of the future of dermatology. By reverting "dormant" genes to a functional state, vitamin C could be a frontline player in regenerative skin therapy.So, if you're already sprinkling VC into your smoothies or using it in your skincare routine, science is revealing there's a lot more to this unassuming vitamin than we ever thought.

better than botox! turn back the clock on your skin with this common vitamin

Diagnostic Anomaly: A Rare Uterine Condition Caused This Woman To Suffer A 1,000‑Day Straight Period

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'Diagnostic Anomaly' is a Health And Me Series, where we dive deep into some of the rarest of rare diseases. Here, we trace such diseases and what causes them. We also try to bring case studies around the same.

Just the idea of bleeding for more than a few days each month is exhausting but imagine bleeding every day—for almost three years.

That's not a metaphor, that's the real-life experience of a young woman who's endured more than 1,000 consecutive days with continuous menstrual bleeding. No respite. No break. Only doctors, tests, hormone therapy, and bewilderment. Initially, it was apparently a textbook case of polycystic ovary syndrome (PCOS). But when the standard treatments didn't work and the bleeding continued to refuse to cease, her case became a medical enigma. It wasn't until almost day 950—and a hint from a TikTok follower—that she came across a potential solution: a rare anatomical anomaly called a <span>bicornuate uterus</span>, or what many refer to as a "heart-shaped uterus."

Poppy's nightmare started quietly, with stubborn spotting and profuse bleeding. At first, doctors thought she might have polycystic ovary syndrome (PCOS), a typical hormonal disorder that can impact menstruation. But this diagnosis wouldn't account for the intensity or longevity of her bleeding. She went through cycles of medications, ultrasounds, intrauterine devices (IUDs), and round-after-round of doctor visits—but nothing stopped the bleeding.

"My iron levels are rock bottom. I have headaches all the time, nausea, muscle and bone pain," she posted in one of her TikTok videos. Even after going through multiple rounds of testing and treatment, no doctor was able to find a specific reason for her persisting symptoms.

It wasn't until day 950 of her 1,000-day ordeal that a forgotten clue resurfaced—and it was in the first ultrasound she'd ever had. Courtesy of the crowd-sourced information provided by her social media friends, Poppy learned she could have a bicornuate uterus, or a "heart-shaped uterus."

This uncommon congenital condition, seen in fewer than 0.5% of women, results in the uterus forming two separate cavities rather than one. This developmental defect may significantly affect menstrual bleeding and fertility.

Bicornuate uterus is a condition that happens during fetal development where the two Mullerian ducts do not join to form one uterine cavity. Two horn-like parts develop instead, which is heart-shaped. Most often, it never gets noticed until something goes wrong, particularly during pregnancy or menstruation.

Although the condition is not necessarily dangerous, it has the potential to cause serious symptoms such as heavy or extended menstrual bleeding, pelvic pain, and painful sex. In severe instances, it can raise the risk of miscarriage, preterm labor, and other complications during pregnancy.

Medical staff usually miss a bicornuate uterus unless actively searching for uterine anomalies. And unless it is extremely serious or a patient is pregnant, years may pass before detection.

In Poppy's situation, the anomaly was detected on her initial scan but never marked as a possible problem by any of her physicians—a breakdown in communication that cost her almost three years of physical and emotional pain.

<h2>Current Treatment For A Bicornuate Uterus</h2>

Having determined the probable reason for her ongoing bleeding, Poppy now is being subjected to additional tests, such as a detailed hormonal panel. Her IUD will be removed, and she will have a dilation and curettage (D&amp;C) procedure done to remove abnormal tissue accumulation in her uterine lining.

The best hope is corrective surgery—a procedure known as metroplasty—that seeks to reshape the uterus into one cavity. Though controversial and only for specific situations, metroplasty has relieved many women of their symptoms and greatly enhanced their reproductive records.

For Poppy, living without daily bleeding seems unreal. She described the possibility of relief in one word: "heaven."

Can You Get Pregnant with a Bicornuate Uterus?

Yes, but the path is not sure to be smooth. Although a bicornuate uterus never in itself prevents conception, it does complicate the pregnancy process. Since the uterus will not have enough room to grow, risks like miscarriage, premature birth, and low birth weight are greater.

Physicians usually advise greater prenatal surveillance to monitor fetal growth and uterine development. Sometimes in advance, cesarean section births may be scheduled because of irregular baby positioning.

The condition is characterized by the healthcare provider as being "partial" or "complete" based on the depth of the indentation in the uterus. A partial bicornuate uterus has a shallow indentation, whereas a complete one displays a deep, heart-shaped division.

Not every woman with a bicornuate uterus needs surgery. For most, the condition is not a big deal and doesn't impact life much. But for women like Poppy—suffering tremendously without relief—surgical repair can be transformative.

Metroplasty, most commonly performed through minimally invasive laparoscopic intervention, is the excision of the dividing tissue to form a more traditional uterine form. Post-operative treatment typically involves waiting after the surgery before trying to conceive because there is a danger of uterine rupture.

What sets Poppy's case apart is the fact that she has utilized TikTok as a forum not only to rant about her frustrations but also to teach. Her candor about a very private and mostly forbidden health concern has inspired thousands of women to challenge their own diagnoses and stand up for themselves in medical environments.

Poppy's case is a powerful reminder of the value of perseverance, self-advocacy, and the strength of online communities. As she inches toward a possible solution, her saga continues to encourage women to raise their voices, ask questions, and demand answers.

Because sometimes, the clue to solving a medical mystery isn’t hidden—it’s just been ignored.

If you’ve been experiencing prolonged menstrual symptoms or unexplained pelvic pain, consult a gynecologist and ask whether a uterine anomaly like a bicornuate uterus could be involved. Early diagnosis can change the course of your health.

women health

bicornuate uterus

1000 day period

nonstop periods

heart shaped uterus

menstrual disorder

rare uterine condition

prolonged bleeding causes

'Diagnostic Anomaly' is a Health And Me Series, where we dive deep into some of the rarest of rare diseases. Here, we trace such diseases and what causes them. We also try to bring case studies around the same.Just the idea of bleeding for more than a few days each month is exhausting but imagine bleeding every day—for almost three years.That's not a metaphor, that's the real-life experience of a young woman who's endured more than 1,000 consecutive days with continuous menstrual bleeding. No respite. No break. Only doctors, tests, hormone therapy, and bewilderment. Initially, it was apparently a textbook case of polycystic ovary syndrome (PCOS). But when the standard treatments didn't work and the bleeding continued to refuse to cease, her case became a medical enigma. It wasn't until almost day 950—and a hint from a TikTok follower—that she came across a potential solution: a rare anatomical anomaly called a bicornuate uterus, or what many refer to as a "heart-shaped uterus."Poppy's nightmare started quietly, with stubborn spotting and profuse bleeding. At first, doctors thought she might have polycystic ovary syndrome (PCOS), a typical hormonal disorder that can impact menstruation. But this diagnosis wouldn't account for the intensity or longevity of her bleeding. She went through cycles of medications, ultrasounds, intrauterine devices (IUDs), and round-after-round of doctor visits—but nothing stopped the bleeding."My iron levels are rock bottom. I have headaches all the time, nausea, muscle and bone pain," she posted in one of her TikTok videos. Even after going through multiple rounds of testing and treatment, no doctor was able to find a specific reason for her persisting symptoms.It wasn't until day 950 of her 1,000-day ordeal that a forgotten clue resurfaced—and it was in the first ultrasound she'd ever had. Courtesy of the crowd-sourced information provided by her social media friends, Poppy learned she could have a bicornuate uterus, or a "heart-shaped uterus."This uncommon congenital condition, seen in fewer than 0.5% of women, results in the uterus forming two separate cavities rather than one. This developmental defect may significantly affect menstrual bleeding and fertility.What Is a Bicornuate Uterus?Bicornuate uterus is a condition that happens during fetal development where the two Mullerian ducts do not join to form one uterine cavity. Two horn-like parts develop instead, which is heart-shaped. Most often, it never gets noticed until something goes wrong, particularly during pregnancy or menstruation.Although the condition is not necessarily dangerous, it has the potential to cause serious symptoms such as heavy or extended menstrual bleeding, pelvic pain, and painful sex. In severe instances, it can raise the risk of miscarriage, preterm labor, and other complications during pregnancy.Why Was It Missed?Medical staff usually miss a bicornuate uterus unless actively searching for uterine anomalies. And unless it is extremely serious or a patient is pregnant, years may pass before detection.In Poppy's situation, the anomaly was detected on her initial scan but never marked as a possible problem by any of her physicians—a breakdown in communication that cost her almost three years of physical and emotional pain.Current Treatment For A Bicornuate UterusHaving determined the probable reason for her ongoing bleeding, Poppy now is being subjected to additional tests, such as a detailed hormonal panel. Her IUD will be removed, and she will have a dilation and curettage (D&C) procedure done to remove abnormal tissue accumulation in her uterine lining.The best hope is corrective surgery—a procedure known as metroplasty—that seeks to reshape the uterus into one cavity. Though controversial and only for specific situations, metroplasty has relieved many women of their symptoms and greatly enhanced their reproductive records.For Poppy, living without daily bleeding seems unreal. She described the possibility of relief in one word: "heaven."Can You Get Pregnant with a Bicornuate Uterus?Yes, but the path is not sure to be smooth. Although a bicornuate uterus never in itself prevents conception, it does complicate the pregnancy process. Since the uterus will not have enough room to grow, risks like miscarriage, premature birth, and low birth weight are greater.Physicians usually advise greater prenatal surveillance to monitor fetal growth and uterine development. Sometimes in advance, cesarean section births may be scheduled because of irregular baby positioning.Types of Bicornuate UterusThe condition is characterized by the healthcare provider as being "partial" or "complete" based on the depth of the indentation in the uterus. A partial bicornuate uterus has a shallow indentation, whereas a complete one displays a deep, heart-shaped division.Is Surgery Always Necessary?Not every woman with a bicornuate uterus needs surgery. For most, the condition is not a big deal and doesn't impact life much. But for women like Poppy—suffering tremendously without relief—surgical repair can be transformative.Metroplasty, most commonly performed through minimally invasive laparoscopic intervention, is the excision of the dividing tissue to form a more traditional uterine form. Post-operative treatment typically involves waiting after the surgery before trying to conceive because there is a danger of uterine rupture.What sets Poppy's case apart is the fact that she has utilized TikTok as a forum not only to rant about her frustrations but also to teach. Her candor about a very private and mostly forbidden health concern has inspired thousands of women to challenge their own diagnoses and stand up for themselves in medical environments.Poppy's case is a powerful reminder of the value of perseverance, self-advocacy, and the strength of online communities. As she inches toward a possible solution, her saga continues to encourage women to raise their voices, ask questions, and demand answers.Because sometimes, the clue to solving a medical mystery isn’t hidden—it’s just been ignored.If you’ve been experiencing prolonged menstrual symptoms or unexplained pelvic pain, consult a gynecologist and ask whether a uterine anomaly like a bicornuate uterus could be involved. Early diagnosis can change the course of your health.

diagnostic anomaly: a rare uterine condition caused this woman to suffer a 1,000‑day straight period

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