Blog

Back-To-School: For Kiddos and Rarents!

8/23/2023

Going back to school can be exciting, but it can also be a hectic time for rare families! Fighting H.A.R.D. teen Kaylee Mescal has some tips for Fighting H.A.R.D. kiddos and Rarents that can make the process a little bit easier. Fighting H.A.R.D. kiddo and Rarent support groups can also be a great resource to discuss concerns and experiences with other families who "get it". Feel free to contact us for more information!

"All About Service Dogs" By Kaylee Mescal

8/3/2023

What is a Service Dog?

A service dog is a dog specifically trained to perform tasks to help an individual with a disability. There are multiple types of service dogs including but not limited to mobility, seizure alert, diabetic alert, and cardiac alert. They are working dogs, not pets, and should be treated with respect as they have a very important job.

Where are service dogs allowed to go and what can businesses ask?

Service dogs are allowed to go anywhere that their handler(owner) goes. Things like allergies or a fear of dogs are not valid reasons to refuse a service dog. Businesses are legally allowed to ask two questions. First is if the dog is a service animal and second what tasks the service dog is trained to do. “Certifications” or “IDs” for service dogs are NOT real things.

Parenteral Nutrition and Vascular Access Devices by Morgan Burger

7/11/2023

What is Parenteral Nutrition and What is Intravenous (IV) Therapy?

Whereas enteral nutrition involves the delivery of food, water, and medications to your digestive system through a feeding tube, parenteral nutrition is completely different. Parenteral nutrition also delivers food, water, and medications, but it does so intravenously (through a vein). This means that the digestive system is essentially bypassed, and is uninvolved in the uptake of nutrients (Cleveland Clinic).

Read More Here!

Enteral Nutrition and Feeding Tubes by Morgan Burger

7/11/2023

What is Enteral Nutrition and What is a Feeding Tube?
While it may sound overly complicated, “enteral nutrition” really just refers to the delivery of liquid food, water, and medication to the digestive system. And the “feeding tube” is the medical device that makes enteral nutrition possible. Think of it like this, enteral nutrition is basically a magic trick that allows kids to take in proper nutrients and stay hydrated. And the feeding tube is the magic wand that makes it come to life! But why would someone need a feeding tube in the first place? As per the “Guide To Tube Feeding For Patients and Families,” which has been kindly published as an online PDF (here) by the Michael Garron Hospital, there are many medically necessary reasons for using a feeding tube.
These include when patients are:

Having difficulty swallowing
Unable to eat post-op (following surgery)
Undergoing treatments such as radiation
In need of additional caloric input to increase their strength

Read More Here!

Telehealth: Health and Policy Significance; Connecting Chronic Illness and Rare Disease Patients to Comprehensive Care in the U.S.

5/10/2023

This was created by Alexandra Crocker for a health policy class at Franklin and Marshall College. The graphic went alongside a presentation discussing the importance of telehealth, the Interstate Medical Licensure Compact (IMLC), and comprehensive care for rare disease and chronic illness patients in the U.S.

Intérpretes: ¿Dónde están cuando los necesitamos? Hay recursos disponibles que se mantienen ocultos para quienes más los necesitan.

5/1/2023

Publication

This is a piece written by Alexandra Crocker that was published in an official Spanish bulletin at Franklin and Marshall College. It is about the need for more interpreters, especially in medical settings.

Soy uno de los afortunados. Tengo un sistema de apoyo que garantiza que obtengo todos los recursos que necesito para tener la mejor calidad de vida posible. Pero es cierto que sin mi familia enseñándome cómo abogar por mí mismo, nunca sabría el alcance de la asistencia que podría recibir para controlar mis condiciones de salud. Hay un sinnúmero de personas que no tuvieron tanta suerte, y ahora están confundidas o desconocen las oportunidades que tienen para manejar la vida cotidiana de una manera más productiva. Uno de los recursos más comúnmente subutilizados es un intérprete.

OpEd: Improving Access to Telehealth: The Case for Interstate Medical Licensure Compact With a Focus on Rare Diseases and Chronic Illnesses

4/29/2023

Although it is a fundamental human right, many Americans still struggle to obtain access to healthcare. This is especially true for those who have chronic illnesses and rare disorders because they frequently confront great obstacles in getting the care they require (Sroberts, 2023). Many of these individuals reside in distant or underdeveloped regions where there are few medical specialists, which makes these difficulties even more difficult (NRHA, 2022). Fortunately, telemedicine has become a viable answer to these issues, especially since the emergence of the COVID-19 pandemic, giving patients a way to get care while remaining in their own homes. However, the broad use of telehealth is still constrained by numerous obstacles, particularly those related to medical licensing. The solution? The Interstate Medical Licensure Compact.

Postural Orthostatic Tachycardia Syndrome and COVID-19 Infection and Vaccination

3/29/2023

The COVID-19 Pandemic has shed a much-needed light on a debilitating condition called Postural Orthostatic Tachycardia Syndrome (POTS). According to Johns Hopkins Medicine, POTS is “a blood circulation disorder characterized by two factors: a specific group of symptoms that frequently occur when standing upright, and a heart rate increase from horizontal to standing of at least 30 beats per minute in adults, or at least 40 beats per minute in adolescents, measured during the first 10 minutes of standing.” POTS has no known cure, and its prevalence is over 200,000 cases per year in the United States. It is most common in biological females and in the age group of 15-50. Left untreated, it can cause heart failure, injury due to falls, and a generally overworked heart.

Rare Reflections

6/26/2022

Blog Post 1:
The Beginning- Definitions and Statistics

Blog Post 2:
Research for Rare Diseases (Or Lack Thereof)

Blog Post 3:
Quality of Care for Rare Disease Patients

Blog Post 4:
Economic Impact of Rare Diseases

Blog Post 5:
Insurance Discrimination for Rare Diseases

Blog Post 6:
Public Policy for Rare Diseases

Authors

Jonna Crocker is an Applied Economics and Management major at Cornell University and, within these Rare Reflections, analyzes and discusses rare disease issues relating to her field of study.

Alexandra Crocker is a Public Health and Government major at Franklin and Marshall College. She explores some different topics relating to health policy, rare disease, and the need for more interpreters, especially in medical settings.

Morgan Burger is a Health Sciences major at the University of Miami. She is also pursuing minors in Biology and Public Health. She interned for Fighting H.A.R.D. Foundation in the summer of 2023.

Kaylee Mescal is a senior in high school diagnosed with Complex Regional Pain Syndrome, Occult Tethered Cord Syndrome, and Chiari Malformation. Her service dog is named Chance! She writes about her experiences and hopes to raise awareness, especially about service animals.

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