A Family’s Battle with Chiari Malformation

Meet the Matthews family! Tamara has graciously agreed to share her family’s journey with rare diseases and how they manage a busy and happy household with two children.
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In November 2003, our happy family (mom, dad and 3 year old son) became complete with the birth of our beautiful baby girl. The NICU respiratory team was ready for her as complications were expected – she’d been an “unresponsive” baby in utero. An amniocentesis was performed to see if her lungs were mature enough, and she was delivered via C-section at 38 weeks.
The problems that kept her in the NICU, (fever, sepsis, extreme jaundice, apneas) were a vivid reminder of the fears when her brother was born, full term, with an unexplained brain hemorrhage.
Though much of her early years were spent traveling to various specialists, and receiving speech, physical and occupational therapy, overall she was a contented and cheerful child. At age 6, we found that she suffered from “congenital panhypopituitarism”, a big term that means she lacks all hormones, and needs supplementation daily, including daily growth hormone injections.
Prior to beginning growth hormone treatment, all children must have a brain MRI to be sure there are no tumors that are obstructing the pituitary gland. Thankfully no tumors were found, but a “Chiari malformation” was discovered. This occurs when part of the brain, the cerebral tonsils, descend into the spinal column. This cuts off the normal flow of cerebral spinal fluid. Subsequent MRI’s showed “syringomyelia” from 3 syrinx – bubbles of built up CSF in the spinal cord. Brain decompression surgery is the only treatment.
Our daughter never had the “classic Chiari headaches” that form at the base of the skull, or upon sneezing or coughing. Yet, when her skull was opened, her surgeon said her skull was actually wearing away from the inside out due to all of the pressure! The symptoms of nausea, dizziness, and fatigue, previously attributed to the pituitary issues, were actually symptoms of Chiari. We were very fortunate that this condition was discovered before permanent damage was done. The longer the syrinx remain, the more damage they do to nerves in the spinal cord, and the placement of hers would also lead to scoliosis.
Some patients lose control of their bladder and bowels, and live in extreme and permanent pain, unless there is early intervention. So at age 6, our precious little girl went to Johns Hopkins Hospital in Baltimore, MD, for brain surgery. It was the most terrifying time of our lives. Fortunately, we were blessed to have the care and expertise of Dr. Ben Carson.
He removed part of the rear portion of her skull and vertebrae, creating more space for the cerebral tonsils. Recovery was difficult due to her other health complications, but after a couple of months, we saw our joyful child blossom! Tears came to my eyes the first time I saw her skip, and sing a song while taking a walk. I was not consciously aware that those things had been missing, but realized how much better she felt when I saw her do them for the first time!
Lightning struck twice when in December 2012, our son was also diagnosed with Chiari and syringomyelia. There was no real reason, just a “mother’s instinct” that caused me to ask for an MRI for him. He was watched for a couple of years, but surgery was done when he began to have some slight and intermittent finger tingling. This is something that would normally not be bothersome, but having had the MRI’s, the pediatric neurosurgeon could see that the syrinx lay right at the nerve that affects the fingers.
My son then also had a brain decompression surgery with laminectomy and duraplasty – a procedure in which the outer covering of the brain is opened slightly and a patch is put in to allow for more space. We still do not know if Chiari had any part in his very unusual brain hemorrhage at birth.
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Living with Panhypopituitarism and Adrenal Insufficiency

Meet this amazing family and their little girl who lives with multiple conditions, including Adrenal Insufficiency.

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I’m Eilidh’s mom, Amory. Our family includes myself, Eilidh’s daddy, Craig, her super awesome big brother, Miles, her beautiful, smart big sister, Raven, and Eilidh, of course.

We live in Texas just north of Austin. We moved here when Eilidh was 10 months old. We have 3 big dogs. Harley (14 yo Black Lab), Kato (2 year old Plott/Pitt mix), and Lady (2 yo Black Lab – who is Eilidh’s service dog).

If Eilidh had her choice, I would probably still be pregnant with her! At 42 weeks, on a Tuesday afternoon, she finally graced us with her presence. It was September 14th and Eilidh was born peacefully at home with the assistance of a midwife. Her big brother slept through the entire (3 hours) labor and was pleasantly surprised to have a sister when he finished his nap. In the beginning, we had no reasons to think there was anything amiss. She was over 7 pounds and cute as a ladybug’s ear.

She didn’t have much interest in sucking, but my lactation consultant assured me that this was completely normal for some babies. We rested all afternoon and evening and I tried diligently to get her to suck. I pumped colostrum and dripped it into her mouth just waiting for her to have an interest in nursing. I completely credit having Eilidh at home with the reason she is alive today.

It was 4am and I was holding her, steadily dripping colostrum into her sweet little mouth. My parents were sleeping in the living room, my three year old was sound asleep in his room, and my husband was snoring softly next to us. Eilidh’s lips puckered as if she was sucking on a lemon and she stopped breathing.

My educational background is in family and child development. I have taken child and adult CPR for health professionals more times than I can count. However, when my brand new baby stopped breathing at 12 hours old, I needed the 911 operator to say “Have you started CPR?” for me to move on life saving protocol. Maybe it was new mom hormones or exhaustion from labor and no sleep, but I’m so incredibly thankful for her asking that simple question.

Our house was less than 1 mile from a fire station. It was raining that September night. When EMS receives a call that a baby has stopped breathing, it doesn’t matter who you are, they call in the cavalry. Within 3 minutes of us getting on the phone with the dispatcher, Eilidh started to breathe again (Thank you, Jesus!) and there were 15 very large men surrounding my baby while I sat next to her on the floor in my husband’s old tshirt and Depends. Glamorous!

The chief of police, every available EMS member, 3 fire trucks and 2 ambulances were at our house. They checked her vitals and hooked her up to oxygen. She was stable. Because she was stable, we had options. We were able to make the 30 minute trip into Dallas to Medical City as opposed to a smaller community hospital on the east side of Dallas.

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When we arrived at Medical City, they took Eilidh and began running tests. They also wanted to get lines into her umbilical stump and that required a bit of work that Craig and I could not be right with her for. During this procedure, her breathing became unstable and she was intubated.

Preliminary labs came back and her glucose was 1. While this was very shocking to everyone, the not breathing factor outweighed her measly glucose numbers and the attending that night had probably never dealt with a kiddo quite like Eilidh. Hindsight, right?

Over the next several days she was intubated, not intubated, on scheduled IV feeds, on continuous feeds, testing this and testing that. Inborn Error of Metabolism was thrown around. I had to Google that. Sheesh!

Test after test and still nothing. Her acid levels were high, but she was breathing over the vent and brain activity and echo were all normal. The MRI and EEG were both normal. Newborn screening blood test was also normal. Glucose levels were still wonky at times, but nothing like on admission.

On day 5, additional blood testing showed low thyroid enzymes. They started her on syntroid immediately and said this could be the cause for all of the issues. Later in that same day, the IVs in her arms were infiltrated.

The neonatologist on the day shift thought this would be a good time to try to come off of continuous IV feeds since despite their efforts they were not able to immediately replace those IVs. The plan was to check glucose every three hours before starting a new feed.

Just before I was getting ready to go home for the night, the nurse checked her glucose and it was 48. The neonatologist was on point. He immediately started barking orders at the nurse to draw labs for glucose, cortisol, insulin, and growth hormone. He assured me that they would keep her glucose up via NG tube through the night and if that became problematic, they would do a surgical line for an IV.

He told me that he thought she may have a central hormone issue. They would get the necessary labs and we could consult with endocrine the next day. He affirmed that the hormone issue would be manageable but lifelong. On that note, I went home terrified and hopeful with nothing concrete to Google. Day 6. The blood work showed deficits in cortisol at 0 and Thyroid Stimulating Hormone (TSH) was 4. The endocrinologist came and gave me a down and dirty endocrine anatomy and physiology lesson explaining that this tiny little Master Gland was causing all of our issues. Eilidh’s official diagnosis was congenital Panhypopituitarism. Say WHAT?

Panhypopituitarism (PHP), for Eilidh, includes growth hormone deficiency, hypothyroidism, and adrenal insufficiency. An ophthalmologist was also brought in to determine if her optic nerves were properly formed and if she had any vision impairments, which can be a part of PHP. Thankfully, she passed that test with flying colors. We spent another 21 days in the NICU. It took her several more days to catch on to feeding orally. On October 11th, we went home.

Managing Rare Diseases

Eilidh was the happiest baby you could ever meet. As she grew, however, there were several bumps in the road. She would have 3-4 episodes a week of being awake for 4 hours in the middle of the night. This continued until she was almost 3. She didn’t begin walking until she was 23 months old. She has low muscle tone around and in her mouth and in her core.

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When she was 2, she began having severe vomiting episodes. We were hospitalized several times for this. Test after test by allergy and gastroenterologists came up empty.

Her steroids were increased due to the almost daily vomiting and she began to gain excess weight. Her doctors were concerned about the weight gain and put her on a strict low carb 800 calorie/day diet. We cut all processed carbs. Within 2 days, she lost 2 inches around her waist and the gagging and vomiting stopped. We were told that she must be unable to process something that is in processed carbohydrates. It could be baking soda or baking powder or an unnamed ingredient that is added. Whatever it is, as long as she doesn’t get any processed carbs, she’s good.

Eilidh’s speech is delayed and she has cognitive delays. She tested around the level of a 2.5-3 year old at 5 years. She has fine and gross motor delays and benefits greatly from the help of a private Occupational Therapist, a Speech Therapist, and now a Physical Therapist.

For the past 3 year, she attended our local elementary school for 4 hours a day/5 days a week for Preschool Program for Children with Disabilities (PPCD.) She gets speech therapy there and occupational therapy.

This fall (2016), she will start Kindergarten in a special education classroom. We are so excited for this new adventure and Lady gets to go with her! In February of 2014, Eilidh had her first seizure. She was diagnosed with epilepsy after an EEG and continues to take antiepileptic medications in addition to her hormone replacements.

At this time, the epilepsy has not affected her Panhypopituitarism. For the most part, her epilepsy has been well controlled with seizure meds. We monitor her closely. We use a Sami Alert Camera at night that alarms when there is movement that lasts over a set amount of time. This has provided significant relief in night time stress for Craig and I.

Helpful Resources

We began fundraising to get a service dog for Eilidh (www.aservicedogforeilidh.com) in 2014. We just brought Lady home in July 2016 from All Purpose Canines. She is trained to detect low glucose levels (a symptom of Adrenal Insufficiency) and provides companionship for Eilidh during high stress times and seizures.

We are so grateful to the Magic Foundation for providing a support system for parents with of children with Panhypopituitarism. Eilidh was about 6 months old when I came across the Facebook group and joined a family of parents, of whom many have become lifelong friends. Eilidh continues to keep us on our toes and requires constant out of the box thinking. She is a bright light in our lives and brings joy to anyone she meets.

I used to joke that while pregnant, I had prayed and prayed for a baby with blue eyes. When she was born with blue eyes and no pituitary gland, I quickly offered to take another color eyes just to have that functioning pituitary. Her eyes are now green and hazel and we still don’t have a pituitary gland, but we’ve gained so much more in the lives and loves that we have encountered over the course of this journey with our girl. While we may not know what the future holds for Eilidh, we know that it will all work out for the good.

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#Wear4Rare365 Campaign Launching on Rare Disease Day, February 28, 2017

In case you missed it, The Mighty ran the CLF post on the need for an emergency treatment database for rare and chronically ill patients. We’ve seen some amazing traction from this post in the last few weeks and we’re thrilled with the number of organizations that have signed up for an awareness day.

If you haven’t already, please share information about our campaign with other patient groups you may be working with. Thank you!

Why We Need to Close the Gap in Emergency Medicine for Rare Disease

*Originally published on The Mighty (11/15/2016)

As children, we are taught from a very young age to question everything. There is no such thing as a dumb question. We learn through asking questions. We are told we need to question authority. So why is it when it comes to the rare disease community, so many questions are left unanswered?

When you become a part of the rare disease community, you do not receive an invitation. You are not welcomed in with a cup of coffee and pinned at a new membership meeting, you’re thrust into a new realm without a roadmap. There may be others traveling in the same general direction you are, but your headlights are the only ones on the road. Suddenly there are no shortage of questions.

What does the diagnosis mean? What will the treatment look like? Who will be my doctor? My loved one’s doctor? What’s the prognosis? And the most frequent question – why?

There are over 7,000 known rare diseases and of those only five percent have FDA approved treatment. Over 30 million Americans live with one of those 7,000 rare diseases or one out of every ten Americans. Half of those 30 million are children and of those children with rare disease 30 percent won’t live to see their sixth birthday.

My daughter is one of those 15 million, and while we are grateful she has the best possible medical care and celebrated her seventh birthday this year, there are still questions about her health and future. Why?

In a time where Congress has pursued a two billion dollar funding increase for the National Institutes of Health and Rare Disease Awareness Day is recognized in 80 countries around the world, why aren’t rare disease patients properly treated in emergency situations? Why is there a gap in emergency medicine between the rare disease population – 30 million Americans – and everyone else?

My father was diagnosed with a rare disease called amyloidosis in 2013. His diagnosis came just weeks before he passed away. For two years prior, he was in and out of emergency rooms where highly trained medical staff, the best in Kansas City, could not treat him. Why? He didn’t have a diagnosis, and therefore he didn’t have a treatment protocol. But even if he had a treatment protocol, there was no guarantee that the highly trained medical staff would have had it on record and could have executed it. So we stand in the gap.

When my daughter was born in 2009, she spent a few days in the NICU for hypoglycemia and jaundice. We were released in five days and when she didn’t put on weight as expected. We increased her feedings and masked what was really going on with her.

Four months pass and we’re in the emergency room because of a single feeding I missed because I let her sleep. Suddenly ten different medical professionals are crammed into her cubicle in the emergency room, struggling to save her life while my husband and I stand there. In the gap. Five days later she is diagnosed with panhypoputuitarism and secondary adrenal insufficiency and we are the only headlights on the road. We are discharged with scant information on how to treat this rare diagnosis, which comes with pills three times a day, a daily injection, and two emergency injections.

When you are diagnosed with adrenal insufficiency, or AI, a little vial of SoluCortef is your lifeline. See, people who do not have adrenal insufficiencies naturally produce up to ten times the normal amount of a hormone called cortisol, which is vital to the maintenance of blood pressure and heart muscle tone, as well as sugar and salt balance, during times of physical stress. When illness or injury occurs in adrenal insufficient individuals, however, an immediate additional dose of glucocorticoids (hydrocortisone) is necessary to avert adrenal crisis. Delaying treatment means shock, heart failure, coma and/or death. We’re not talking about delaying treatment for a few hours, we’re talking 30 minutes or less.

For around eight dollars a syringe, you can buy this shelf-stable med and carry it with you. It’s literally life insurance for AI patients.  So we buy the meds. We get the medical bracelets. We put stickers in our car windows, magnets on our tailgates and labels on her seatbelt.

We hole up at home and read everything we can get our hands on regarding her treatment and prognosis. We talk to doctors. We explain her condition to family. And we’re feeling like we can handle this diagnosis. We can handle the daily shots and meds and treatment protocols. We have several emergency injections on hand and we’re ready for the worst. If she breaks her arm, give the shot. If she has uncontrollable vomiting, give the shot – the list goes on, but we’re confident – we’ve got this.

Now before you all get excited and think the happy ending is just around the bend, it’s not. Today the gap for treatment of rare disease patients in an emergency medical situation looks much different than for the “typical” population because even though we never leave the house without these kits, they are useless. They are useless because without proper treatment protocols, EMS will not administer them in an accident.

Imagine. Seven years of appointments, treatments and tests. Imagine growing up and not knowing any different. Imagine being seven and battling a rare disease while your parents drag you across the country to meet with doctors while looking for a diagnosis for a new condition that you’ve developed.

You’d probably want a break, right? Maybe it would be nice to jump in the car and head out with the family to grab an ice cream cone. But life happens. There’s a car accident. You break your arm, but mom and dad are out cold. Who will give you that shot? Who will prevent your medical crisis, prevent a coma, and save your life? Who will stand in the gap?

Typically, you might think the highly trained EMS staff will do it. You can hear their sirens in the distance, the Calvary has arrived.

But there are no protocols in place. The tool is there and everyone knows how to use it, but because there aren’t printed instructions, no one is allowed to use it.

And we’re not the only ones affected. There are 30 million Americans who play Russian roulette with their lives every time they leave their house. Drive their car. Cross their county line. Ride their bike.

If we are to question everything, in my opinion, it’s worth noting that the two billion dollars in NIH funding for rare disease research means nothing. It means nothing at all to me if we can’t develop emergency protocols that allow our highly qualified EMS providers nationwide to use the tools at their disposal to save lives. A piece of paper might be all that stands between rare disease patients’ lives and the research pool NIH has to draw from.

So what’s the solution?

We are pushing to create a National Emergency Treatment Database for Chronically Ill and Rare Disease Patients that would help emergency physicians access treatment protocols for the 30 million Americans who live with a rare disease.

EMS could have a quick access to show limited information such as Emergency Treatment Protocols and medications to be able to provide emergency treatment in the field. Patients would identify themselves as registry members via medical bracelets, QR code stickers on their vehicles and driver’s licenses, and local notification of EMS.

Currently, EMS protocols for rare disease patients are handled on a county-by-county, state-by-state basis. This means that there is no continuity of care when a patient travels outside of their home area. A patient can do everything right – carry their emergency meds, wear a medical id, inform their local EMS, even mark their vehicle – but that means nothing if EMS cannot treat due to a lack of protocol.This lack of information means delayed treatment and possible death. There is no reason an EMT should ever stand in the field with medications in hand and watch their patient die because they don’t have a piece of paper permitting them to treat the patient.

Going forward, we might not be able to close the gap between rare disease patients and the rest of the population when it comes to emergency treatments. But we can certainly fill it with the lives we save by establishing a national rare disease database.

I am currently lobbying Congress to establish such a database, but I need help to demonstrate how far-reaching the lack of protocols really is. Beginning August 1st, and for the next year, I have started wearing a different non-profit organization’s t-shirt every day to represent those affected by rare disease and/or chronic illness. Each day, we will use social media to share info about the disease, organizations that support that patient population, and the beautiful faces of people battling that condition, as well as their stories. At the end of the year, we’ll use those shirts to create a quilt that will be presented to the National Institutes of Health to commemorate our year of awareness.

How can you get involved? Easy. Join us. Check our calendar to see if your chronic or rare disease is currently represented on the #Wear4Rare calendar. If it’s not, book a slot. If it is, please email us at wear4rare365@cambrialordfoundation.org. We want to tell your story! We would also love to add more non-profit organizations to our Database Coalition – please join us. Together we can shed light on this gap and we can close it with the lives we save.

Meet Jeff (Multiple Mylomea and Amyloidosis)

My dad was one of the toughest people I have ever known. Starting at the age of three when he was hit by a truck, he spent large portions of his life hospitalized for a variety of reasons. As a child, he endured several surgeries and hospitalizations after his accident, was later bit by a rabid dog, and once fell off a roof he was repairing. When my daughter Cambria was diagnosed with a rare disease in 2009 at four months old, he understood perhaps better than anyone what it’s like to be a hospitalized child because he had been one himself.

Dad and Cam

When I was a kid, he was rarely down with a cold or the flu, despite a heavy travel schedule and a lifelong smoking habit. Dad was relatively healthy aside from high blood pressure issues and heart concerns. As a young adult, it became more obvious to me that Dad had some major medical concerns ranging from an aortic dissection to a quintuple bypass. After each medical event, Dad recovered and came back stronger than ever despite incredible odds.

It was clear Dad was gearing up for another medical battle as his energy declined and he became unable to eat in early 2012. Together, we saw several specialists, eager to find a reason for Dad’s health decline. There were rounds and rounds of tests and after yet another hospitalization in 2012, doctors were still unsure of “what” exactly was wrong. At night, I would spend hours with medical research books and websites, reaching out to my daughter’s specialists at the NIH and across the country in an effort to find a diagnosis for my Dad.

Dad and Elle

In August 2013, we visited a specialist we had seen the previous year who was finally able to offer a diagnosis of Amyloidosis. Later that day, Dad checked into the hospital for the last time and spent the last few weeks of his life battling a diagnosis that virtually no one had heard of.

How We Managed the Rare Disease:

Since we had only weeks between Dad’s diagnosis and his passing, it was a challenge to coordinate his specialists with his primary care doctors in the ICU. No one had much experience with the diagnosis and everyone was reluctant to give him a prognosis. To further complicate things, the day after Dad checked in, he underwent a COPD induced tracheostomy that rendered him unable to speak verbally.

As Dad’s legal representative, and more importantly, his daughter, it was important for me to advocate for my dad since he could not. As his advocate, we had discussed his desires for a DNR order prior to his hospitalization and which treatments he did and did not want. Having the documentation and legal forms that outlined my Dad’s wishes made it much easier for me as his advocate since I was not making decisions for him, but enforcing the choices he had made for himself.

From a practical standpoint, we used small white boards to communicate with him and to give him a way to communicate with his nurses and doctors. I was very fortunate to have the ability to meet with his specialists every morning during rounds since that gave me the opportunity to ask questions about his care and treatments. During this time, I kept careful notes and used spreadsheets to monitor changes to his treatments or new symptoms.

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Helpful Resources:

We were unable to take advantage of these resources, but the following organizations are great places to find support:

https://www.themmrf.org/

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Meet Miles (Phelan-McDermid Syndrome)

Meet sweet Miles and his warrior mama, Rachael!

My son Miles was diagnosed with a rare chromosome abnormality, Phelan McDermid Syndrome (22q13 deletion), at a month old while still in the NICU. At birth, he had extremely low tone, seizures, required oxygen as well as “physical abnormalities”.

After a long two months in the hospital, my son took his first breaths of outside air. And the incredible journey began.

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I was shocked at how little was known about my sons diagnosis. The doctors had given me a paragraph printout from the internet and basically said that’s all they knew. The unknown. Most diagnosed will never (or regress and lose) any functional language. Lots have extremely low tone, sometimes with therapy it will improve, other cases it doesn’t. Developmental delays are also very common.

Each child/adult diagnosed with Phelan McDermid Syndrome is unique. With their own special set of strengths and challenges. I am still learning what this means for my beautiful baby boy. He has exceeded some of the expectations I had at diagnosis but is still “showing” me what this life holds for us.

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Some of my favorite characteristics about Miles are… He’s funny! Motivated. Curious. Musically talented. And all around a happy boy. He’s absolutely perfect (and by textbook, rare)!

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How We Manage Rare Disease:

First and foremost with love, understanding and patience. Rare disease does not define my son.

We see just shy of a dozen specialists at our local children’s hospital. My son has also received early intervention services since he was released from the hospital at two months old. We implement his therapies at home and in the community.

Another big part of managing Phelan McDermid Syndrome is education and research. Educating myself on possible medical issues related to the syndrome. Strategies to minimize deficits. And participating in research to help the better understanding of the syndrome, thus giving my son and other children like him a chance for a better life.

Resources We Find Helpful:

Mostly, the group of other parents and caregivers who have children with Phelan McDermid Syndrome, that I belong to. These amazing people live this life and speak honestly and from experience. They are some of the most incredible, genuine and knowledgeable people I’ve been blessed to have in my life.

Secondly, our therapists have really helped educate and support me through this journey. Not only do they provide a selfless service to my son, but to me also.

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Lastly (but definitely not least), the state. State programs have enabled me to stay at home and care for my son (definitely not in luxury but we make it work, for now). Attend all of his doctor and therapy appointments. Enroll him in a preschool that specializes in kids with disabilities. And most importantly, provide insurance for him.

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The CLF is Pursuing a National Emergency Treatment Database for 30 million Americans

With over 30 million Americans living with a rare disease, it’s natural to wonder what Emergency Medical Services (EMS) look like for the 10% of the population affected.

For patients like Leonora, it doesn’t look good. A lack of consistent EMS education and coverage for her condition, Secondary Adrenal Insufficiency, means that in a medical crisis, trained EMS professionals might be unable to administer the life-saving medications she needs to survive a medical crisis. A vial of Solucortef costs approximately $8-$10 with a 5 year shelf life and the medical is easy to inject.

Sadly, Adrenal Insufficient patients are not the only rare disease population to need specific emergency treatment protocols. While rare disease patients can take all of the necessary steps to identify themselves for emergency medical treatment – like wearing medic alert bracelets, flagging their file with local EMS/hospitals, carrying medications, and identifying their vehicles – a lack of continuity in recognizing and enforcing these protocols means that rare disease patients are often prisoners in their own counties.

An opt-in National Emergency Treatment Database for Rare Disease Patients would prevent unnecessary medical delays and treatment errors while providing patients with national coverage of their protocols, regardless of where they travel.

Join the Cambria Lord Foundation as we kick-off our #Wear4Rare365 campaign to raise awareness for the rare disease community and the need for a National Emergency Treatment Database.