Month: November 2021

Have you ever experienced an unexplained, life-altering, mystery condition that didn’t go away in spite of searching for answers from numerous physicians and specialists? Did it remain a mystery that became more than a mere inconvenience? So much so that it became a debilitating or life-threatening condition? If so, you are not alone. These are sometimes known as “medically unexplained symptoms” when they last for more than a few weeks, but doctors can’t find a problem with the body that may be the cause. Not understanding the cause can make them even more distressing and difficult to cope with.

Now, let’s look at mental health conditions in the same context as these “medically unexplained symptoms”. I would like to give you an example of a “possible scenario” for someone who is experiencing a mental health disorder.

You may find yourself suddenly becoming forgetful, unable to produce simple words, you may become anxious, paranoid, and deeply depressed, and you may have embarrassing physical symptoms such as sudden jerking movements in your body. People laugh at you, and you are humiliated. You spend years trying to figure out what’s actually going on and how to cure this mystery disease of the mind. However, there is no cure because you are told that at this time, there is no definitive diagnosable disease, and your symptoms are, just ‘all in your head’. The advice you are given? “Go home, eat well, get plenty of exercise, plenty of rest, and think positive thoughts”.

The scenario continues, and by now, due to the supposed ‘all in your head’ symptoms, you may find that you need to look for other employment or go on permanent disability. Finally, you begin to isolate yourself, friendships begin to fade, and you think it would just be better if you weren’t here at all. After all, you feel that you are indeed a misfit, and that the whole world is continuing on in its normal way, only without you.

I’ve just described to you the types of struggles that many people with mental conditions go through. Due to lack of knowledge, as well as stigma, many begin to feel hopeless.

You may say, “Oh, but we’ve come a long way in the way we look at mental illness.” But have we? Would you be willing to tell a group of people or a prospective boss that you have a mental disorder? Better yet, someone you were romantically interested in? Would you?

I was having a conversation with a friend of mine today about the possibility of speaking to a group about the role genetics plays in mental health conditions. I feel it helps to de-stigmatize mental health conditions when one understands the biological components behind these mystery diseases. I firmly feel that when someone knows that there is a real scientific basis for our mental health conditions, and that we are searching for cures, it will ease their minds. The reasons? One, they won’t feel completely alone. Two, there is hope. And three, for the first time in their lives, they might actually feel like they can breathe. There is a scientific reason, there is hope, and they are not alone. This is very powerful information.

I’m not going to pretend that we have all of the answers as of yet. We are far from it. But we are finally looking in the right direction; and that is in our genetic make-up, in our brain chemistry, and in our environment.

There is much evidence from recent studies that genetics and epigenetics contribute to many mental health disorders – and in some disorders, to a great degree. However, we still have a long way to go in discovering the complex interplay between genetic predisposition, environment, and situational factors.

While we wait for scientific research to give us more definitive answers, let’s help our children, young adults, and those of all ages know that what many are going through is real (not just in their heads), and that each day, we are learning more and more about the biological causes of mental health conditions. Let’s let those who suffer know that they are not alone. Let’ s let them know there is hope.

Here is some very good news:

Today, Representatives Eric Swalwell (D-CA), Scott Peters (D-CA), and Tom Emmer (R-MN) introduced bipartisan legislation to better diagnose and treat genetic disorders like cancer and rare diseases, particularly in children. This legislation was included in Representatives DeGette and Upton’s CURES 2.0, legislation that was introduced today, which would improve how drug treatments and therapies are delivered to patients. Bipartisan legislation will help diagnose and treat genetic disorders like cancer and RARE diseases, particularly in children. This is extremely good news being that nearly 80% of rare diseases are genetic and 70% begin in childhood. 

“This much-needed legislation will help provide hope and relief to millions of children living with a mysterious and rare disease,” said Rep. Eric Swalwell.”

Although a significant number of rare diseases are genetic, they have a varied etiology:  infectious, autoimmune, nutritional, and environmental diseases and cancers. Regardless of etiology, living with a rare disease can have a detrimental effect on mental well-being. While this could be said of any disease or chronic condition, the mental impact can be amplified in the case of rare diseases. Anxiety, stress, low mood, emotional exhaustion, and suicidal thoughts, have all been identified in the rare disease population. https://www.psychiatryadvisor.com/home/topics/general-psychiatry/rare-diseases-a-psychiatric-concern/

“Genetic and genomic testing technology is improving every day, and this bill provides a critical step forward for making these tests more accessible to pediatric patients.”“Genetic and genomic testing options are the future of medicine. Offering this service will help us understand the individual needs of patients and ensure we can provide answers for millions of families with children struggling with unknown illnesses. Making these tests more accessible will save lives, revolutionize our health care industry, and ease the burden on our system through prevention instead of treatment,” said Rep. Tom Emmer.

https://swalwell.house.gov/media-center/press-releases/swalwell-peters-emmer-introduce-bill-make-genetic-and-genomic-testing

Enough is enough. Enough has cost people their livelihoods, their family relationships, and in many cases, their very own lives.
 
What is it going to take to get people to wake up?   More suicides?  More mental disabilities resulting in our government spending more and more for work loss productivity?  More over-crowding of prisons?  More homelessness?  More substance abuse? More physical conditions – such as heart disease, obesity, asthma – where stress can be a contributing factor?

The list goes on and on, yet our funding for research into mental health diseases and suicide continues to lag way behind that of other diseases and conditions. My question has been, Why?  Also, why do so many people seem to be hesitant about finding the biological factors involved in mental health disease, in particular, the genetic component? 

 
Many of us still want to bury our heads in the sand, as if to say, “Oh,  my family doesn’t have any mental health issues.  And I certainly don’t.”  Well, in many of these cases, this is simply not the truth. So why wouldn’t we want to find the answers?
 

It occurred to me one day that while the stigma attached to mental health conditions is a reason, it’s not the only one.
Don’t get me wrong.  Stigma is a huge problem. 

However, another motivator occurred to me; one that is far more powerful than even stigma. 
This is fear.  Fear that when/if we find that biological reasons (including genetics) are indeed a major component of our mental health disorders, we’ll have to admit that we, our loved ones, and most of all, our children may be genetically predisposed.  This is frightening.  It’s much easier to tell ourselves that mental health disorders are not really brain diseases, but disorders based on only environmental causes.  We have a recipe for dealing with this – our current medications and therapies.  This recipe is far from perfect, but a recipe nonetheless.
 

I’ll have to admit that it is pretty scary, being that we don’t have all of the answers at this time to treat these diseases.  However, with our current research, we are in far better shape than we were even five years ago. And through research, we are getting closer to finding the answers to genetic predispositions and, in turn, finding effective treatments and cures.

 
Instead of being frightened of how genetics plays into the mental health equation, I think we should welcome it with open arms. This takes courage.

Just imagine if we could have blood tests to determine the predisposition of mental health conditions. We could target them at an early age and treat them before they are able to advance to serious levels. And while continuing our research for possible cures, we could educate those who are predisposed to these conditions in effective coping strategies. This knowledge is empowering. This knowledge gives hope.

We can’t go back and change the precious time that has been lost for this much needed research, but we can do something now.  Please join forces with our group to advocate for funding into genetic research, and to finally end this war on mental health disease.  We, and our loved ones, are worth it.

 
*** Please use our ‘Contact’ form to get in touch with us to join our movement in whatever capacity you are able.
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*** Please look at the ‘What You Can Do’ tab for a sample letter to write to your legislators. ***

 
So, what motivates You? We need your input. Together, we can help to end the war on mental health disease!

Obsessive-Compulsive Disorder (OCD) is a well-known mental health condition, but for many years it has been one that’s easily misunderstood. This is partly due to the way it is often portrayed in media and partly due to a lack of knowledge. Fortunately, we now understand that OCD is an actual mental disorder. However, much is still unknown as to its causes. Over the years, blame has been placed on environmental factors such as stress and parenting styles. But no research has ever shown that stress or the way a person interacted with his or her parents during childhood causes OCD.  Stress can, however, be a factor in triggering OCD in someone who is predisposed to it, and OCD symptoms can worsen in times of severe stress.

In speaking of this predisposition, researchers have recently discovered genetic risk factors for OCD that could help pave the way for earlier diagnosis and improved treatment for children and youth. Dr. Paul Arnold, professor and director of The Mathison Centre for Mental Health Research & Education at the Cumming School of Medicine in Toronto, stated the following:

“Our group made the first finding of a genome-wide significant risk gene relevant to childhood OCD. We’ve known that OCD runs in families, but we hadn’t identified and validated specific genetic risks of OCD symptoms in children and youth until now.”

After looking across millions of genetic variants from the saliva samples, the team identified that children and youth with a genetic variant in the gene PTPRD had a greater risk for more obsessive-compulsive traits. The findings are published in Translational Psychiatry.

Dr. Christie Burton, PhD, lead author and research associate in the Neurosciences & Mental Health program at SickKids (partnering in this study), stated that discovering the genes involved in OCD is critical to help improve patients’ lives. “This type of research is still in the early stages, but the hope is these findings will lead us to understand the causes of OCD, which in turn could help identify people with OCD sooner and develop better treatments.”

Included in this article is an account of a young man, going by the name of Sam. Sam has OCD, and seems to be doing well with his current therapy and medication. However, our current treatments don’t have the same effects on all patients with OCD. In fact, few patients experience complete remission of symptoms despite available treatments. There is an urgent need for conceptually novel pharmacological strategies to improve treatment outcomes for those patients who demonstrate only a partial response to therapy or prove to be highly treatment resistant. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2993523/

In speaking about Sam, he is 17 years old, and lives with OCD. With therapy and medication, he says he has been able to face his obsessions and compulsions, ride out the anxiety and control his actions. Looking back at his childhood, Sam says he had some OCD tendencies as early as elementary school, but neither he nor his family realized he had a mental health condition. The researchers hope that by understanding the genetics of OCD they can develop better treatments, improve outcomes and diagnose young people like Sam earlier.

In Sam’s words, “At first I wasn’t sure what to do with the diagnosis, it was very foreign, I didn’t want to perceive myself as having a mental health issue. But, knowing I have OCD helped me overcome the challenges. With therapy and medication, I’ve stopped OCD from overtaking my life and taken back control.”

Sam is a real teenager, but Sam isn’t his real name. He says due to the stigma around OCD he would prefer to remain anonymous.

I find this real story of a young man living with OCD to be very revealing in regard to the state of affairs of our mental health crisis as it speaks to a major roadblock; stigma. Sam is helping by offering his story, but still feels he needs to remain anonymous. This is a major roadblock. If the public was made aware of the the genetic role involved in OCD and other mental health diseases, more people may willingly come forward to tell their stories without feeling ashamed and stigmatized Why? Because mental health conditions would be treated as brain diseases, which they are, and not personality weaknesses or character flaws. And, in response, the fight for genetic research would be strengthened. Then, we can really make changes to help those suffering.

https://www.news-medical.net/news/20210412/Researchers-discover-genetic-risk-factors-for-childhood-OCD.aspx#:~:text=After%20looking%20across%20millions%20of,are%20published%20in%20Translational%20Psychiatry