Medical Advances In DMD Treatment Over The Past 20 Years Is Nothing Short of A Miracle

Gene modification and replacement therapy has given new hope to parents, where none existed. Billions of dollars are being thrown at trying to solve the puzzle of finding treatments to stop DMD in its tracks and ultimately discovering a cure for DMD. The best minds in science are working to solve these challenges.

Physical Health Care Delivery is Now Proactive, While Mental Health Care Remains Reactive

In the United States, physical health care delivery is proactive, providing early interventions in order to avoid more costly interventions down the road. In contrast, our mental health care delivery system is predominantly reactive. Mental & emotional health care interventions typically begin only after a person is in crisis, at which point providing successful outcomes are more complex, expensive, and difficult to achieve. If left untreated, traumas can result in nightmares, insomnia, anxiety, depression, phobias, substance abuse, panic attacks, anger, irritability, or hopelessness. An individual might also begin to have physical symptoms such as gastrointestinal distress, rapid heartbeat, or extreme fatigue.[create footnote]

Emotional Support for DMD families isn’t Receiving the Attention it Requires

However, the medical community is essentially ignoring the emotional health of patients and their families and most families do not receive the emotional counseling they need. In fact, many parents anecdotally say that the emotional aspects of the disease, ie the OCD, anxiety, anger or Interpersonal issues are more difficult to deal with than DMD’s physical challenges.

Traditional Psychotherapy is Costly and can’t meet DMD community Demands

Psychotherapy is an effective, but costly solution to treating emotional distress. Many therapists charge hundreds of dollars per hour and do not accept insurance. For therapists who do accept insurance, finding a therapist who is accepting new patients can be difficult. Unfortunately traditional psychotherapy doesn’t scale very well and there will never be enough psychotherapists to meet the needs of the Duchenne community. STTT is offering a low cost (free to users) scalable science based alternative to psychotherapy in order to help DMD families at scale. A solution that when fully rolled out can potentially help thousands and thousands of DMD families.

DMD Adds New and Unique Challenges to Family Management and Dynamics 

Managing and maintaining a healthy family dynamic is difficult enough, but when you add one or more children with DMD into the equation, extra special attention to organizational detail is required.

A DMD diagnosis doesn’t make any of life's other stressors go away, in fact, it exacerbates them. Financial worries, Marital Strife, Anxiety, Depression, Nutrition, chaotic home environment, Job stress, health concerns, loss of a parent etc all become more pronounced when caring for a DMD child. The Special guidance that STTT provides can potentially help families maintain as “normal’ a circumstance as possible under the circumstance. 

For the Health & Safety of the Child, DMD Family Caregivers Need to Remain Mentally Sound

The front line caregiver is typically the mother and father of the child. However, unlike ‘typical’ kids, children with DMD become increasingly dependent on their parents as they get older. As the caregiving becomes more strenuous both physically and mentally it is important that the parents have implemented systems based on best practices, in order to avoid caregiver burnout.

If Treating the ‘Whole’ Patient is a Priority, Emotional Wellness Has to Be Part of the Solution

Due to a shortage of trained therapists, stigma associated with seeking professional emotional help and high out of pocket expenses; only a small percentage of DMD parents seek the emotional help they need to cope with their daunting circumstances.

By our estimates there are about 20,000 patients in the US and over 350,000 DMD patients worldwide which equates to roughly 700,000 DMD parents. Only a small percentage of parents are receiving professional emotional support on a regular or “as needed” basis.

Our Goal is to bring emotional support on a global scale to the DMD community. Regardless of a DMD family's location, income level or language all DMD families will be able to access the Somebody to Talk To Platform.