Awareness

By May 8, 2019Blog, News, Resources

By: Jenny


Among the BIND membership, 52% are survivors of a stroke, while 10.5% are on the other side of a brain tumor diagnosis.  We have 3 overcomers who fit into both categories, a statistical anomaly that can only be explained by the miracles that happen within this small community, one of which happens to be me. We, unfortunately, are counted within the 1-5% of people who experience a stroke after brain surgery to remove a tumor.

795,000 Americans endure strokes each year, with more than 140,000 people dying.  Stroke is also the leading cause of serious, long-term disability.

The effects of a stroke vary from person-to-person based on the type, severity, location, and number of strokes. The brain is complex. Each area of the brain is responsible for a specific function or ability. When an area of the brain is damaged from a stroke, the loss of normal function of a part of the body may occur. This may result in a disability.

The twelve most common effects of a stroke are:

1.          Paralysis on one side of the body (Hemiplegia)

2.          Weak Motor Control (Hemiparesis)

3.          Tight, stiff muscles (Spasticity)

4.          Extremely stiff, painful muscles (Contractures)

5.          Shoulder complications

6.          Foot drop

7.          Curled toes

8.          Balance issues

9.          Learned nonuse

10.          Visual problems

11.          Difficulty swallowing (Dysphagia)

12.          Impaired vision or spatial attention

Furthermore, at least 86,000 new brain tumors are identified in the U.S. annually. There are more than 120 different types, and they are the leading cause of cancer deaths in children and young adults.

In my obviously biased opinion, research into this disease and possible cures is grossly underfunded and ineffective. Data collected by Central Brain Tumor Registry of the United States (CBTRUS) in “CBTRUS Statistical Facts Report of Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2010 – 2014” suggests:

  • Despite the amount of brain tumors, and their devastating prognosis, there have only been four (4) FDA approved drugs – and one device – to treat brain tumors in the past 30 years.
  • For many tumor types, surgery and radiation remain the standard of care.
  • There has never been a drug developed and approved specifically for malignant pediatric brain tumors.
  • The four approved drugs for brain tumors have provided only incremental improvements to patient survival, and mortality rates have not changed over the past 30 years.
  • Between 1998 and 2014, there were 78 investigational brain tumor drugs that entered the clinical trial evaluation process.  75 failed.   That is a 25:1 failure ratio in developing new brain tumor treatments over the past two decades.

It is often difficult to talk about such a hard topic, but always remember statistics don’t paint the whole picture. Brain tumor warriors are usually the bravest, toughest fighters you will ever meet. NO ONE FIGHTS ALONE!

More than any other cancer, brain tumors can have lasting and life-altering physical, cognitive, and psychological impacts on a patient’s life.

This means malignant brain tumors can often be described as equal parts neurological disease and deadly cancer.

It has been my experience that saying your tumor is benign gives people the impression that it is curable, and isn’t a very serious situation, however, this is not the case. Even benign brain tumors can be deadly if they interfere with portions of the brain responsible for vital bodily functions. It is also pretty safe to say that brain surgery is seldom benign.

We at BIND are passionate about spreading awareness of both these maladies. That is why we choose to draw attention to both the American Stroke Association (https://www.strokeassociation.org/) and the American Brain Tumor Association (https://www.abta.org/). We should all spread the word and get a spotlight aimed at these causes, so that we can give hope to and encourage those living with or affected by strokes or brain tumors.