Monthly Archives: February 2018

Rare Disease Day: What is a Rare Disease?

rare-disease-day-logoRare Disease Day is tomorrow, February 28th. The objective of Rare Disease Day is to raise awareness about the impact of rare diseases on peoples lives. It targets not only the general public, but also policy makers, researchers, health professionals, and other people in places of power that have an ability to make change. Rare Disease Day is always on the last day of February. The first Rare Disease Day was on February 29th, as it is considered a “rare” date. However now it is on the last day of February every year, as February has a “rare” number of days compared to other months.

What is a Rare Disease?

A disorder or disease is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

  • 80% of rare diseases have been identified to originate in genetic code. The remaining 20% are the result of infections, whether that be bacterial or viral, allergies and environment, or are degenerative and proliferate. 50% of these rare diseases affect children.

Common Problems Faced

Many patients wait a long time to receive a diagnosis due to a lack of scientific knowledge and quality information on rare diseases. This can prolong pain and suffering and delay treatment that may alleviate some symptoms or pain. There are often no existing effective cures to rare diseases, which adds to the high level of pain and suffering experienced by patients and their families. Additionally, due to the lack of knowledge, there are many difficulties in accessing treatment and care, which can cause excessive social and financial burdens. Misdiagnosis is not uncommon, as there are many disorders with relatively common symptoms that can hide underlying rare diseases. Symptoms not only differ from disease to disease but also from patient to patient, adding to the difficulty of diagnosis.

Some Examples of Rare Diseases

  1. Hutchinson-Gilford Progeria
    • Hutchinson-Gilford Progeria is a genetic condition that is characterized by the dramatic physical changes, namely rapid aging in childhood. There is no cure or established treatment procedure. Doctors mainly focus on reducing complications that arise with the condition
  2. Fields’ Disease
    • Fields’ Disease is named after two twins from Wales, and does not have a medical name. Doctors class it as a neuromuscular disease which causes the muscles in the body to slowly deteriorate.
  3. Von Hippel-Lindau
    • Von Hippel-Lindau is characterized by the growth of tumors in the central nervous system. The tumors are often benign, and are made of blood vessels. They are medically known as Hemangioblastomas, and can grown in the retina, brain, and spinal cord.

 

 

Sources Used

https://www.rarediseaseday.org/article/what-is-a-rare-disease

https://www.rarediseaseday.org/article/what-is-rare-disease-day

https://food.ndtv.com/health/rare-disease-day-7-most-rare-diseases-in-the-world-and-the-importance-of-research-1664134

https://sofiasees.org/event/ct-rare-disease-day-2018/

 

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Eating Disorder Awareness and Screening Week: February 26 – March 4th

NEDAwareness_Logo

The last full week of February is Eating Disorder Awareness and Screening Week. Eating disorders are defined as mental illnesses that cause serious disturbances in a person’s everyday diet. This can mean eating both too much or too little, obsessing over food, and distress or concern about body weight/ shape. The purpose of Eating Disorder Awareness and Screening Week is to fight myths and misunderstandings about various eating disorders, as well as to help people identify whether or not they have a problem.

There are multiple types of eating disorders. Warning, this section may be triggering to some as it details harmful behaviors that accompany some eating disorders.

  1. Anorexia Nervosa

This eating disorder is characterized by distorted body image and severe weight loss that can lead to severe weight loss, with a pathological fear of becoming fat. Some warning signs that you or someone you know may be suffering from anorexia nervosa include but are not limited to:

  • refusal to eat
  • denial of hunger
  • difficulty concentrating
  • obsession with body size and shape
  • skipping meals
  • making excuses for not eating
  • adopting meal or eating rituals, such as cutting food into small pieces or spitting it out after chewing
  • eating only certain foods perceived as “safe”
  • excessive exercise
  • repeated weighing of themselves
  • wearing baggy clothes
  • cooking elaborate meals for others but refusing to eat

2. Bulimia Nervosa

This eating disorder is characterized by frequent episodes of binge eating, followed by purging behaviors such as self-induced vomit, fasting, excessive exercise, or the consumption of pills to induce bowel-movements in order to avoid weight gain. Binge eating is the act of eating large amounts of foods in a short period of time. Some warning signs that you or someone you know may be suffering from Bulimia Nervosa include but are not limited to:

  • eating large quantities of foods, followed by a compensatory behavior
  • dehydration or weakness
  • disappearing to the bathroom after meals
  • finding food in hidden and unusual places
  • intense fear of gaining weight
  • dental issues due to vomiting
  • scars on fingers or knuckles due to self-induced vomiting
  • social withdrawal
  • over-exercise

3. Binge Eating Disorder

This eating disorder is characterized as recurring episodes of eating significantly more food in a short period of time than most people would eat under similar circumstances, with episodes marked by feelings of disgust or lack of control. Some symptoms that you or someone you know may be suffering from binge eating disorder include, but are not limited to:

  • Eating exceedingly quickly
  • Eating even when full
  • Feelings of guilt, embarrassment, or disgust
  •  Frequent dieting without weight loss
  • Frequently eating alone
  • Hoarding food
  • Hiding empty containers

Some people may show signs of disordered eating that do not fit these symptoms or definitions. These are called “eating disorder not otherwise specified”.

What to do if you think you or someone you know may be suffering from an eating disorder:

  • Approach Them
    • Be Prepared
      • Educate yourself on eating disorders.
      • Realize that the person you are concerned for may be suffering from feelings of anxiety, guilt, and shame.
    • Choose the Proper Environment
      • Approach the person in an environment where they feel safe and comfortable.
    • Use the Right Language
      • Take into account their fear of disclosing their feelings or behaviors.
      • Let them know you care about them and support them.
      • Encourage them to express how they feel, rather than how you feel. Listen respectively, and let them know you won’t judge or criticize them.
      • Encourage them to seek help.
    • AVOID
      • Putting the focus on food; instead, try talking about how the person is feeling.
      • Using language that implies blame or that the person is doing something wrong, i.e. “You are concerning me”. Instead, try “I am concerned about you”.
      • Taking on the role of a therapist. You do not have to have all the answers. Instead, focus on listening and creating a supportive space.
      • Using manipulative statements, i.e. “Think about how you are affecting me”, or “If you cared about me, you would eat”. This can worsen feelings of guilt and shame, and feed into their disorder.
      • Using threatening statements. For example, “If you don’t eat properly I will punish you”. This can negatively effect peoples emotions and behavior, and can make the problem worse
  • Contact a Helpline
    • If you feel like you cannot confide in anyone you know, or would like more information on how to further help someone you think may be suffering from an eating disorder, it may be helpful to talk to a stranger about whats going on. Some helplines you can contact are;
      • The National Eating Disorder Association
        • 1-800-931-2237
      • National Association of Anorexia Nervosa and Other Related Disorders
        • 1-630-577-1330
      • Overeaters Anonymous
        • 1-505-891-2664
    • A good resource for some additional helplines, along with a detailed paragraph on what they can offer, can be found on Bulimia.com 

Some Misconceptions about Eating Disorders

  • Eating disorders are a choice
    • Eating disorders are not a choice. They are a complex mental illness.
  • It is not a big deal
    • It is a big deal. Eating disorders have the highest mortality rate of any mental illness.
  • Anorexia is the only serious eating disorder
    • All eating disorders are serious.
  • If my love one insists they are fine, I should believe them
    • Some people with eating disorders have problems with self-awareness. They may believe they are fine when they are actually ill.
  • If someone isn’t emancipated, they’re not that sick.
    • Most people with an eating disorder are not underweight. You cannot tell if someone has an eating disorder just by looking at them.
  • Eating disorders only focus on food.
    • Eating disorders often focus on food in order to have control and to reduce anxiety that may be caused by other parts of life.
  • Eating disorders are only for girls
    • Anyone can suffer from an eating disorder, regardless of gender.

 

Links used in the article

https://www.timberlineknolls.com/eating-disorder/anorexia/sign-effects/

https://www.news-medical.net/health/What-is-an-Eating-

Disorder.aspxhttps://www.nationaleatingdisorders.org

https://www.waldeneatingdisorders.com/8-warning-signs-of-bulimia-nervosa/

http://www.timberlineknolls.com/eating-disorder/binge-eating/signs-effects/

http://www.nedc.com.au/what-to-say-and-do

https://www.bulimia.com/topics/eating-disorder-hotline/

https://www.nationaleatingdisorders.org/toolkit/parent-toolkit/eating-disorder-myths

https://www.pnw.edu/counseling/neda-month/