Rare Disease Day Comes and Goes

In the age of social media, it seems like every day is “National Something Random Day.” For example, February 22 was “National Margarita Day.” Two days prior, February 20, was “National Love Your Pet Day.” There were plenty of posts on social media of people drinking their margaritas and giving cute puppies kisses. That same week also saw the coming and going of International Rare Disease Day. A day of recognition for many people whose struggles often go unnoticed, but somehow, this “day” seemed noticeably absent from most social media feeds. The Greenwood Law Firm would like to take this opportunity to acknowledge Rare Disease Day, and we encourage all of our followers to do the same.
Rare Disease Day was created to raise awareness and increase the visibility of people living with rare diseases. “One in twenty people will live with a rare disease at some point in their life;” however, many of these individuals will spend their entire lives without effective treatment, and in many cases, without a proper diagnosis.[1] Because these diseases are considered “rare,” money given to researchers studying these diseases is often very limited because grants are diverted to studying more “common” diseases. This means that many doctors are not well informed about diagnosing and treating rare diseases, and scientists are years away from finding a cure or even a cause for them. Rare disease patients and their caretakers must fill the role of researcher and inform their doctor about their condition and new treatments that may alleviate their symptoms. Additionally, patients with rare diseases can often feel isolated because they feel as if no one, not even their doctor, fully understands their condition.
What are some examples of rare diseases?
Guillain Barré Syndrome (GBS) is a disorder where the patient’s nerves become inflamed causing progressive muscle weakness which can result in complete paralysis. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a similar condition but with a slower onset and persistence of conditions. Both of these conditions have been linked to patients who have received the flu shot.
Transverse Myelitis (TM) is an inflammatory disease affecting the spinal cord causing weakness, sensory alterations, and autonomic dysfunction (the autonomic nervous system is the part of the nervous system responsible for controlling involuntary functions like breathing and the digestive system). TM is also linked to the flu shot.
Acute Disseminated Encephalomyelitis (ADEM) is a neurological inflammatory disease which causes damage to the spinal cord and brain. Symptoms generally occur quickly and include fever, headaches, irritability, fatigue, weight loss, and nausea. Seizures are also commonly reported in patients with ADEM. Vaccinations can trigger ADEM. The flu shot, Gardasil, Menactra, MMR, and Hepatitis B vaccines have all been linked to ADEM.
Dermatomyositis is a type of inflammatory myopathy associated with inflammatory and degenerative changes in the muscles and skin. Symptoms include aches and muscle weakness as well as a distinctive reddish-purple rash on the upper eyelid and on the cheeks and bridge of the nose. Dermatomyositis is associated with vaccines.
Neuromyelitis Optica is a chronic disease associated with inflammation of the optic nerve and the spinal cord. There are two different types of Neuromyelitis Optica: in the “classic” presentation of neuromyelitis optica, one or both optic nerves and spinal cord are subject to a series of hits of inflammation over a couple days or weeks, but after this short period, the symptoms dissipate and go away. The second form is more chronic and is thus characterized by periods of inflammation and remission. Symptoms include pain in the optic nerve and blurred vision in one or both eyes as well as pain in the spine, arms, and legs, with mild to severe paralysis. Neuromyelitis Optica has also been tied to the flu vaccine and well as Gardasil.
The Greenwood Law Firm believes that knowledge about rare diseases and increased visibility of individuals with rare diseases is essential to helping find a cure as well as improving the lives of individuals with these conditions. To further this goal, The Greenwood Law Firm’s blog will continue to post updates about rare diseases and will take a deeper look into these conditions. If you or a loved one has been diagnosed with one of these conditions as the result of a vaccination, please gives us a call at (855) 844-2514 for a free evaluation.
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