Lifestyle, News, Research, Treatment

Celebrating Those Loved and Lost as We Observe Rare Disease Day

February 28, 2021 10:30 am ET
Celebrating Those Loved and Lost as We Observe Rare Disease Day

The very last day of February is dedicated to bringing awareness to not just one issue but many. The last day of February, the 28th, or the 29th during a leap year is World Rare Disease Day and this day has been designated to help bring awareness to rare diseases as well as the impact they have on patients and their lives. Many people are aware of life-threatening, debilitating diseases such as cancer, Alzheimer’s disease, dementia, and other common illnesses that plague the world. World Rare Disease Day sheds light on the estimated 300 million-plus people globally who have rare diseases, not commonly known to most. It helps to showcase the 103 countries holding events on this day as well as the thousands of events hosted online worldwide.

This year, COVID-19 has dramatically impacted the way events are hosted. Instead of having physical locations, many events have opted to go digital being held online. A trip to the Rare Disease Day website will lead you to more than 100 events already scheduled for this incredible day.

A Personal Account

Rare diseases have an effect on roughly 3.5% to 5.9% of the global population today. Rare diseases are caused by many different factors such as environmental issues, allergies, and infections. The majority of rare diseases, however, are genetic. It’s estimated that 72% of all rare diseases are genetic. Of that 72%, 70% of rare diseases are said to begin during childhood. Though 3.5% and 5.9% may sound like small numbers, they translate into hundreds of millions. These numbers become even more real when you are one of the ones that make up the statistics. Sadly, this is a pain I know firsthand. My son Xander was born with a rare genetic disorder called Menkes Disease. This rare disease is a genetic disorder that mainly affects males. Menkes Disease affects the body’s ability to process copper, in essence causing a shutdown of the body’s vital organs. My son Xander was diagnosed with having Menkes Disease at three months old, and he passed away when he was 11 months old.

When it comes to rare diseases and their treatment options, there are very few.  Patients and family members are open to trying anything that might help. Sadly, many rare diseases do not respond to traditional forms of treatments. Additionally, there are no treatments for most rare diseases.

Could Cannabis Help With Rare Diseases?

Cannabis seems to help with many common diseases such as cancer, chronic pain, anxiety, PTSD, and more, but what about rare diseases?  In 2011, when my son passed, I did not have the knowledge of cannabis that I do now. The information wasn’t as abundant on the east coast where I lived as it was on the west coast either.

Could cannabinoid therapies have helped my little man? The answer to that questions is one that I’ll never know. Like so many others on the east coast, lawmakers there felt I didn’t deserve that freedom, nor did my son.

Times have changed. Not necessarily for the better, but they have changed. Children like Alexis Bortell found a second chance at life by leaving her home state of Texas to seek refuge in Colorado. By becoming a medical marijuana refugee, as many call them, she was able to have a second chance at life. Alexis suffers from a rare condition called Dravet syndrome epilepsy. In her case, cannabis was the determining factor that saved her life. She is not alone, as many other children and adults have sought out refuge in Colorado and other states with legal access to cannabis in order to save their lives and or to help improve their overall health and well-being.

Cannabis Science and Knowledge Has Greatly Evolved

The science behind cannabinoid therapies is advancing thanks to legalization. For decades lawmakers have screamed more research is needed yet blocked every door to research that was opened. Only through the perseverance and persistence of the people has the medical science behind cannabis been able to advance. What was once was referred to as getting high, smoking reefer, pot, or marijuana is now referred to as cannabinoid science or endocannabinology. Cannabinoid medicine is not guaranteed to save someone’s life or even to work for someone. However, it does save some people’s lives, and it does work for many different people with a wide range of different ailments, conditions, and diseases.

If lawmakers would only quit tinkering with the lives of millions of people globally by continuing to support outdated cannabis policy, the effect could have a profound impact on those who suffer from rare diseases. Cannabinoid medicine and cannabinoid therapies greatly help to impact the lives of those with medical disorders in a positive way. To continue to tell people, more research is needed and deny them access to medical cannabis is cruel and those demonstrating this behavior should be acknowledged as such. World Rare Disease day by no means is about cannabis. But cannabis could play a pivotal role in helping hundreds of millions who live with rare diseases.

Cannabis has been reported to help control the symptoms of neuropathy, chronic pain, anxiety, depression, cancer, diabetes, epilepsy, sickle cell disease, cystic fibrosis, and more. What’s to say that it couldn’t have endless possibilities in helping with so much more?

World Rare Disease Day isn’t a day for sadness. It is a day for awareness and celebration. On this day, let’s celebrate the life of those who are here and those who are no longer with us. The difference in the lives of those who have a rare disease begins with each one of us. In 2007, there were no events for World Rare Disease Day. In 2008 events started taking place, and 18 countries participated. Since then, this event has grown to include over 100 countries. This leap year, on February 29th, show your support and take part in a World Rare Disease Day event and help bring awareness to rare diseases and the lives they touch.

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