Celebrating Rare Disease Awareness Day
With statistics and some of our story
🦓 We celebrate Rare Disease Awareness Day on the last day of February by wearing ZEBRA STRIPES! Any disease or condition affecting less than 200,000 people in the United States is considered rare. Our rare diagnosis' included Necrotizing Enterocolitis (NEC), Melanonychia, and Vaccine Injuries.
🧑⚕️ One of the things taught to new physicians is the phrase “When you hear hoofs, think horses, not zebras” because the odds are that their the patient will have the more common diagnosis than the rare improbable one.
Here are some statistics about Rare Diseases...
👨👩👧👦 Rare diseases impact more people than cancer and AIDS combined. About 1-in-10 Americans, over 30 million people, have a rare disease with more than half of those being children. Holding hands they would circle the globe 1.5x's.
👼 Many rare diseases result in the premature death of infants & young children or are fatal in early childhood. 30% of children with a rare disease will not live to see their 5th birthday and rare diseases are responsible for 35% of deaths before 1 year old.
🏨 On average it takes 7-8 years to diagnose a rare disease and during this time patients will see over 10 specialists and be misdiagnosed 3 times. 80% of rare diseases are genetic based. Over 65% suffer from Isolation, depression, anxiety, and stress. While just as many caregivers reported the same.
🤱 Our first diagnosis, Necrotizing Enterocolitis (NEC) is a serious intestinal inflammatory disease characterized by infection of the intestinal walls. Overall NEC affects only a few thousand infants per year in the US. It's very rare for an infant who is full term, like Scarlet, to develop NEC. About half of newborns with NEC don't survive.
💉 Also, while vaccine reactions are considered rare by most doctors, an HHS-funded review of vaccine adverse events over a three-year period by Harvard Medical School involving 715,00 patients found that “fewer than 1% of vaccine adverse events are reported.” So, they might not be as rare as we all thought.
💅 Scarlet also has Melanonychia a rare longitudinal discoloration of the nail bed. Melanonychia occurs in less than 2% of Caucasians and is benign. The dark line that grows out of the nail can become Subungual Melanoma about half the time, which is mostly unsurvivable due to late diagnosis.
🦠 There are over 7000 rare diseases that exist with only about 500 FDA-approved treatments. With only 5% of rare diseases having an FDA-approved treatment, physicians are left to treat the majority of rare conditions with non-FDA-approved drugs.
🌱 Families use non-FDA-approved treatments - since most rare diseases don’t have one single approved treatment- and we pray for cures. These diseases are difficult and hard to manage a lot of the time. Many parents become full-time caregivers and suffer from PTSD. And 37% of families had to borrow money.
💰 34% of families sought help from charities or foundations. Like ours. Families and private foundations provide 3% of all medical research funding in the United States. About 50% of rare diseases do not have a foundation researching or supporting their condition.
😉 Miracle mamas know their warriors and their medical complexities better than most in the medical community and we learn to adapt. We network & learn from newfound friends all across the world and find community in other families like ours.
💪 We have to travel for the best experts. We pay out of pocket, we beg for answers, we’ve learned to read research articles, peer-reviewed studies, and we would rather hear an I don’t know instead of something made up.
❤️ Alone we are rare, but together we are strong.
#RareDiseaseAwareness #MthfrGeneWarrior #TogetherWeAreStrong #MTHFR #NEC #VaccineInjury #Melanonychia #MiracleMom #MomVocate #NicuMom #HearThisWell