Our CureBrainDisease Coalition is truly gaining ground. Several of our members were recently interviewed about our mental health moonshot initiative for The GreenvilleJournal – Greenville, SC. The article is only about a five minute read, and speaks straight to the heart of our mental health crisis which is now growing to epidemic proportions. Please take the time to read this important message.
Also, if you haven’t done so already, please sign and share our petition (below). Thank you all for helping to make a brighter future for generations to come!
The following blog highlights the article, “Genetic Testing for Those with Neurodevelopmental Disorders”. The reason I say ‘highlights’ is because the article contains a great deal of information that I won’t be addressing in this blog. I would ask that you please read the article as it is extremely informative.
The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), refers to Neurodevelopmental disorders (NDD) as group of conditions that present during a child’s early developmental period and are characterized by developmental deficits that may create challenges in the child’s personal, social, academic, or occupational functioning. With a combined prevalence of approximately 17% of children ages 3-17 years old in the United States, NDD are the most prevalent chronic medical conditions encountered in pediatric primary care.
NDD include intellectual disabilities (ID), global developmental delays (GDD), communication disorders (language disorder, speech sound disorder, childhood onset fluency disorders, and social/pragmatic communication disorder), autism spectrum disorders (ASD), attention deficit/hyperactivity disorder (ADHD), specific learning disorders (involving reading, written expression, and/or mathematics), and motor disorders (developmental coordination disorder, stereotypic movement disorder, and tic disorders).
Other conditions, outside of the DSM-5, are also considered as neurodevelopmemtal disorders. These conditions include cerebral palsy (CP) and epilepsy, and neuropsychiatric disorders where there is strong clinical and biological evidence of developmental origins, such as schizophrenia.
As I mentioned, NDD are the most prevalent conditions encountered in the pediatric setting. In fact, these disorders are considered to be common, and a significant proportion can be identified by genetic testing. In the last two decades, rapid advances in the development of genetic testing have revolutionized our ability to make specific genetic diagnoses in patients presenting with identification of neurodevelopmental disorders. New genes are being implicated in neurodevelopment at a rapid pace.
So, what do family members want to know? The answer is that in addition to wanting to know their child’s clinical diagnosis and prognosis, they want to know the cause of their child’s developmental disability. With the development of genetic testing in identifying genetic causes for NDD, physicians can provide information on causes to families, along with a more accurate prognosis for their patients. This identification can also be used to find, treat and possibly preventmedical comorbidities.
At this time, genetic testing is considered the standard of care for children and adolescents with Intellectual Disabilities, Global Developmental Delays, and/or Autism Spectrum Disorders, and the future of testing will almost certainly be broadened to include other neurodevelopmental disorders. (Standard of care refers to the attention and care a patient should reasonably be provided.)
To follow up, we think the main point from this article is that conditions which were once believed not to be genetic and/or caused by biological factors are now considered to be diseases with well defined genetic factors. We need to promote science so we can someday understand the genetic and epigenetic causes of serious mental health conditions well beyond schizophrenia and better understand how NDD could be related to mental health conditions. Please support our petition for a Moonshot for Mental Health so that we may have the much needed funding to continue this type of life changing research!
It seems that any time I speak with someone today about mental health disorders, there is a common theme. In almost every conversation, each person reluctantly says that either they, a family member(s) or both, suffer or have suffered from a mental health disorder. I usually bring up the topic because of my work with Cure Brain Disease. After talking about our coalition’s work, they say something like, “Well …… I have (some type of mental health disorder) , and am on medication for it.” Then they tell me about other members of their family who have struggled with a mental health disorder. Some mention that a family member died by suicide. Even though not all suicides are considered to be the result a mental health condition, many of those who have died by suicide were experiencing some type of mental health condition, such as major depressive disorder or anxiety.
The reason I mentioned that those I’ve spoken with ‘reluctantly’ admitted to having a mental health condition of their own, or that of a family member, is because this says to me that we still have so far to go in the area of stigma. Despite the many celebrities speaking out about their own mental health struggles, there is still an enormous amount of stigma surrounding mental health disease. This has to stop.
According to The American Psychiatric Association, stigma and discrimination can contribute to worsening symptoms and reduced likelihood of getting treatment. A recent extensive review of research found that self-stigma leads to negative effects on recovery among people diagnosed with severe mental illnesses, including reduced hope.
Something else I notice in speaking with people about mental health are the number of times they mention that their family members also struggle with mental health disorders. This speaks to the heritability of so many of the serious conditions which we view as brain diseases.
According to NIH, scientists have long recognized that many psychiatric disorders tend to run in families, suggesting potential genetic roots. Such disorders include autism, attention deficit hyperactivity disorder (ADHD), bipolar disorder, major depression and schizophrenia.
And according to NCBI, Generalized anxiety disorder (GAD) and major depressive disorder (MDD) are highly comorbid. A possible explanation is that they share four symptoms, according to the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition – Text Revision (DSM-IV-TR).
So now. Let’s just think about all of this for a minute. Almost everyone I come into contact with, when speaking of mental health, tells me they have, and at least one family member has a mental health disorder which they are taking medication for. That’s a lot of people suffering from mental health disorders!
But remember, they are hesitant to mention this, meaning that there is still a great deal of stigma surrounding mental health conditions. I find myself wondering, just how many people do have some type of mental health condition, and of those, how many suffer in silence due to stigma?
We must all stand up and do something about this. Advocate for research. Educate the children so mental health conditions will become a part of normalized conversations. And break the stigma. Talk about your mental health like you would about your physical health. It’s way past the hour we do this.
Also, please support our Moonshot for Mental Health petition to Congress, and share with as many people as you can! Be well!
A while back, I blogged about where Science and Stigma must meet. Now, I am adding where research and education must meet to fight stigma and end our mental health crisis.
In this blog, I will share some personal snapshots. I’ll begin by telling you what started me down this path in working with several others to create our advocacy group.
My son passed away while he was in graduate school studying to become a school psychologist. I have never known a kinder person in my entire life than my son, and I can say this regardless of the fact that I have had, and still have, the great honor of being called his mother.
I had no idea that school psychologists did anything other than test students to see if they had a learning or emotional disability, and then meet as a team to make plans for these students. I didn’t know they could specialize in a particular field. Well, my son wanted to specialize in the areas of emotional challenges for children and suicide prevention for adolescents. We found this out after he passed away.
If you can only imagine for an instant the impact of the loss of your child, you would know, without a doubt, that you would want to carry on their desire. In this instance, it is a wonderful cause. My son wanted to help young people who suffered with emotional difficulties. So, of course, now I want to to do the same.
The only difference is that I originally wanted to go about helping in a different way. This way was by advocating for research into mental health conditions, so that we could find the root causes for disorders, develop curative therapies, and cut them off at the pass – so to speak. In forming a coalition of like-minded individuals, I soon found out what an arduous task this would be. We formed the ‘Cure Brain Disease Coalition’, and have been advocating for more funding for research in the area of serious mental health conditions, which we deem as Brain Diseases.
I am still focused on this task. We must find the root causes in order to find curative therapies.
However, the question of education looms overhead. It seems my son was onto something equally as important as advocating for research. And this is educating our children.
I remember as a young girl, in the late 1960’s, going through what I now know was a deep depression. I didn’t know what was happening with me, but I dreaded each day with an ominous feeling, and this increased as each morning wore into late afternoons. Late in the afternoons were especially bad for me. I developed phobias, and my OCD increased with each passing day. Of course, no one knew what OCD was at the time, nor had they heard of anorexia, which I developed at age 11. The only thing that saved my diminishing body was that I was at an age where my parents still had a certain amount of control over me and forced me to eat. Later, we would learn of this eating disorder.
Between my depression, my phobias, OCD, and anorexia, I can only remember thinking ‘how unusual’ I felt that I was. It seemed that no one else had “my issues”. I had no idea, at the time, that we had a history in my family of major depressive disorder and OCD. Not that it would have ‘cured’ me, but I believe that understanding there may be a genetic “predisposition” for my feelings, as well as knowing I wasn’t alone, would have helped me tremendously.
(Please understand that if you are ‘genetically predisposed’ to a condition, it does not mean you will automatically develop a disorder.)
So, this is where education comes into the picture. Many children and adolescents are going through mental health conditions, but they feel helpless, hopeless, and alone. Why would they not reach out for help? One reason is they may feel that they are abnormal, and are, therefore, ashamed of reaching out for help. Another reason is they do not realize they may have a ‘real’ medical disorder affecting their brains. This is because they have never been taught about these mental health conditions. So, they continue to suffer in silence. There are a host of reasons, but it all comes back to the central theme of lack of knowledge which feeds stigma.
My son wanted to help these children. He wanted to help these adolescents. Now, upon reflection of my own past, and because of his desire, so do I. But how do we do it?
The answer is pretty basic. As I’ve mentioned in previous blogs, we must have a mental health curriculum, from Kindergarten – 12th grade which is mandated. Teach the children about the signs and symptoms of depression, OCD, anxiety, ADHD, addiction, bipolar disorder, schizophrenia and other serious mental disorders (on age appropriate levels) – just like we do with physical health diseases, such as diabetes, cancer, heart disease, kidney disease, cystic fibrosis, and the list goes on and on.
And in the meantime, tell our young people that there are, indeed, possible genetic links for many of these conditions. We can’t pretend that genetics don’t play a part. They don’t paint the whole picture, but certain genetic links predispose some to a mental disorder. And there is no blame or shame in this.
With more funding, we will continue our research into the causes, and will, hopefully, find cures in the not so distant future. You may ask, ‘But what about now?’ And the answer is that while we wait for research to catch up, there are many specialists who can, indeed, help. The simple fact of knowing there might be a cause, and knowing you’re not alone is very empowering. I know this would have helped me.
Before beginning this blog, I want to say a few things about our coalition’s work. First, we are working very hard, advocating for far more funding for research into the biological causes for mental health diseases. There have been many posts on studies to substantiate the roles of genetics and epigenetics in mental health (brain) diseases. Please look back at the studies that we have blogged about as well as our petition. It’s gaining ground!
Now, I’m switching gears just a bit. In this blog I’ll be talking about the disturbing truth, that even in our schools, mental health is still not taken as seriously as physical health. Throughout the nation, state education systems have mandated that students learn about physical and nutritional health, but with the exception of beginning strides in only a few states, not about mental health.
Extra programs have been added to schools on social and emotional learning, but this is not the same as mandating mental health education to be a required part of the curriculum for elementary, middle, and high school students. Physical education is mandated, so why not mental health education? Don’t get me wrong. I’m not suggesting for one moment that physical education is not important. It is very important. But so is mental health education!
Physical education class is required to help teach children about the value of nutrition and exercise. We teach them about staying fit and eating healthy. Health classes teach about diseases, safe sex, and nutrition. But mental health education? Not there. Is there any question why stigma still surrounds mental health disorders?
This mental health gap in curriculum has a potentially huge impact on society for generations to come, especially when considering that it is estimated that approximately 20-25% of children are experiencing a mental health condition at any given time.
Schools need to be portraying mental health as equally important and crucial as physical health. That starts with making mental health education a required part of education across all schools from kindergarten into high school. When you educate young people about mental health conditions, the conversation is normalized. In doing so, stigma is lifted. And when stigma is lifted, these young people are far more likely to reach out for help.
Please look at what California is doing in the area of education. No states’ mandates for mental health education are perfect, but we believe that the following is a great first start.
“In 1970, the American people made clear their desire for a cure for the second-leading cause of death in the United States. President Nixon responded during his January 1971 State of the Union address: “I will also ask for an appropriation of an extra $100 million to launch an intensive campaign to find a cure for cancer, and I will ask later for whatever additional funds can effectively be used. The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease. Let us make a total national commitment to achieve this goal.”
“On December 23, 1971, President Nixon followed through on his promise as he signed the National Cancer Act into law, declaring, “I hope in the years ahead we will look back on this action today as the most significant action taken during my Administration.” https://dtp.cancer.gov/timeline/flash/milestones/M4_Nixon.htm
Just think of the progress we have made in the War on Cancer because “the people” made it clear that it was their desire; it was important to them. Again, the desire of “the people”.
Why can’t we do the same for brain diseases? The answer is that we can. But we must speak up and let our representatives know that it is important to us, that we are relying on them to allocate far more funding to go into research for the biological causes of mental health diseases – “Brain Diseases”.
Please contact your legislators to let them know that you are relying on them to help end the mental health crisis that we have been in for so long. Together, our voices can be heard.
Find your representatives, and write to them. Remember, they work for you.
We have a question for you. One of our Cure Brain Disease coalition members is scheduled to interview an expert in the field of mental health disorders who has conducted, and continues to conduct, many studies on the root causes of mental health conditions. We would like your input as to what you think. What are your thoughts on the biggest causes of mental health problems? Your input will give us valuable input into an area of questions to be asked.
Although there is no single cause for mental health conditions, here is a list of a number of factors that are thought to contribute to the risk of developing mental disorders. (life experiences, biological factors such as chemical imbalances in the brain, traumatic brain injuries, exposure to environmental factors such as toxic chemicals while in utero, serious medical conditions such as cancer, alcohol and drug use, genetics and family history, feeling isolated)
By now, those who follow us know we are advocating for more research into the biological causes for mental health conditions and suicide. I am now wanting to add a very important point to the conversation. This is that we must make a change in how we are talking to our young people about mental health. I believe that if the public was made aware that there is in fact a genetic component involved in serious mental health conditions and suicide, this in and of itself, would remove much of the stigma surrounding these topics.
All major psychiatric disorders have a familial and heritable component. Twin studies have documented significant heritability across the spectrum of psychopathology, with estimates ranging from 20% to 45% for anxiety disorders, obsessive-compulsive disorder, post traumatic stress disorder, and major depressive disorder; from 50% to 60% for alcohol dependence and anorexia nervosa; and from 75% upward for autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), schizophrenia, and bipolar disorder. https://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.2019.19060643
Of course, genetics isn’t the only factor. However, in many cases, it does account for the predisposition to serious mental health disorders and suicide. Maybe, young people would be more open to reaching out for help if they knew, based on these statistics, that their conditions quite possibly have a biological basis, a “scientific” foundation. As it stands, far too many still suffer in silence due to the stigma of (pardon me for the very stigmatized phrase), ’It’s all in your head’
Do researchers have all of the answers to the causes of these genetic predispositions, and better yet, effective treatments and curative therapies? No, sadly, not yet. What we need is far more research and far more funding for this research.
However, while we wait for science to catch up, we need to take advantage of the help we do have at this time, and that is in working with qualified mental health professionals. Our young people will know that there is a ‘scientific’ reason behind their mental health conditions, and that these conditions are ‘real’, all the while learning valuable coping strategies. I believe people (of all ages) will feel more comfortable in taking that first step forward to reach out for help if they feel they have a real biological condition, and not just something that’s ‘all in your head’, so to speak.
So what am I saying? We must advocate for biological and genetic research, and we must reduce mental health stigma.
But, which comes first???
That’s a good question. I think both need to work simultaneously. In order to reduce stigma, we must have far more research into the biological causes for these brain diseases. On the other hand, in order to gain support for research into the biological causes, we must reduce the stigma surrounding them. Each goes hand in hand.
We all need to work together – scientists, educators, parents, community leaders, and Congress. We must all come together to end our mental health crisis! This is not only for today, but for generations to come. Please join us.
“Moonshot for Mental Health!”
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Hello to everyone who is concerned about our mental health crisis, and who wants to truly be a part of making a change. The following is a very simple request!
I’m attaching a link (directly below the blog) where you may sign a petition. This petition will go to the Appropriations Committee, requesting for more funding for research into the biological causes for mental health disease. I ask that you please sign this petition so we will have a strong, united voice. If you sign, and I hope you do, please do not donate any money. That is not what this is about. This is about coming together as a united voice for a real ‘Moonshot for Mental Health’. United, we can make a difference. Thank you!!!