For Caregivers of Dravet Patients, Emotional and Financial Impact High, Study Reports

Published by: Dravet Syndrome News
Written by: Iqra Mumal

Families caring for patients with Dravet syndrome experience significant emotional, social, and financial impact, according to a multinational study.

This study also found that directs costs from non-seizure-related healthcare use are four times higher than costs directly linked to seizures. High seizure burden was associated with higher healthcare costs as well.

The study, “Caregiver impact and health service use in high and low severity Dravet syndrome: A multinational cohort study,” was published in Seizure: European Journal of Epilepsy.

Symptoms of Dravet syndrome typically appear in the first year of a child’s life. Along with epilepsy, it is associated with a range of developmental and cognitive issues, behavioral disorders, and mobility problems.

While the impact of Dravet on families has not been widely studied, a recent survey has reported that caregivers of Dravet patients contend with a variety of concerns other than seizures, such as the disease’s impact on siblings and issues related to patients’ cognitive impairment.

In 2016, researchers conducted a large multinational online survey called the DS caregiver survey (DISCUSS), which was designed to further understand the clinical, economic, and humanistic burden of Dravet syndrome.

The survey included 584 caregivers of Dravet patients (83% pediatric; 17% adult), of whom more than 90% lived in Europe. The patients’ quality of life was very low, and Dravet patients who had a high seizure frequency had more coexisting conditions reported more emergency treatments, and had a lower quality of life than those who experienced fewer seizures.

To further investigate the financial factors associated with Dravet syndrome, researchers used data from the DISCUSS study to estimate the mean annual direct costs per patient for seizure-related and non-seizure-related healthcare and caregiver out-of-pocket costs in five European countries including France, Germany, Italy, Spain and the U.K.

The annual direct per patient cost for Dravet in these five countries was $15,885 ($9,783 when excluding anti-epileptic medications). This figure consists of $7,957 for treatment of seizure-related symptoms ($1,854 when excluding anti-epileptic therapies) and $7,929 for treatment of non-seizure-related symptoms.

Drivers of total direct costs were anti-epileptic drugs (38%) and non-seizure-related therapies (50%). When researchers excluded costs associated with anti-epileptic drugs, treatment for non-seizure-related symptoms contributed to 81% of direct healthcare costs. As a comparison, in a general pediatric population with epilepsy, treatments for non-seizure-related symptoms make up only 9.1% of total direct costs.

These treatments included physiotherapy, speech and behavioral therapy, and therapies for learning difficulties,  autism/autistic-like symptoms, and attention deficit disorder.

Among these, physiotherapy and speech therapy made up most (79%) of the non-seizure-related costs. Click here to read the rest of the story.

Williams Syndrome Factsheet

 

Download Here: Williams Syndrome Factsheet

National Barrier Awareness Day

National Barrier Awareness Day brings awareness to dissolving stigma’s that keep people with disabilities from advancing in education, barriers in physical access, bridging technology gaps and any type of barriers that prevent people with disabilities to reach their full potential. While there have been many achievements, financial, cultural education and physical barriers still exist.

The History of National Barrier Awareness Day

On May 7 1986, President Ronald Reagan signed Proclamation 5472 as National Barrier Awareness Day.  President Reagan stated that “Eighty percent of Americans will experience some disability in their lifetime that makes it necessary they must surmount and the contributions that they can make to our society.”

Ways to Remove Barriers

While there are still physical barriers that exists, there is very few information on the mental barriers, meaning people that still hold misconceptions, stereotypes and myths regarding individuals with disabilities. what do I mean by mental barriers?

  1. people that are unaware that most disabilities are invisible. Someone parking in a handicapped space might not have a physical disabilities, but could suffer from a debilitating pain. There are also people with cognitive disabilities including, AutismADHD, and Dyslexia.
  2. As professionals, myths, and misconceptions continue when we as professionals stop learning and growing. Disabilities change overtime and as professionals and educators it is important to always learn and grow. For examples, very little was known about autism 25 years ago and more so when it comes to co-occurring disorders such as sensory processing disorder (SPD) and Dysgraphia.
  3. It is time to see the abilities not the disabilities in the person. By focusing on the disabilities, we limit the growth and development which leads to self-confidence to those with disabilities.

Finally, we all have to take the role of advocates. It comes as part of the job. Sometimes it is advocating for both parent and child and using our voice to help others live quality lives.

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Don’t leave employees with dyspraxia out in the cold

Published by: Real Business Company
Written by: Annie May Noonan

he fact that a dyspraxia sufferer isn’t easy to define makes the job of being understood and supported difficult for those with the condition – and I would know.

I was diagnosed with dyspraxia and dyscalculia at the age of eight after my physical balance and concentration levels suddenly, and very rapidly, deteriorated.

From the outside, I made the transition from my junior to ‘senior’ school as an atypical student, able to play sport and complete both writing tasks and times-tables well. My inability to dress or pack my school bag myself didn’t seem like a big issue until I suddenly could no longer retain my balance and started walking into doors, and falling down flights of stairs. I also developed problems writing and was unable to sit on a chair properly.

After my dual diagnosis, my frustrations around the difficulties I was experiencing lessened. I felt a sense of calm and clarity in the fact I had a condition, and could now learn strategies to make living with it less stressful. After seeing an occupational therapist for a year, I was able to manage my condition, however, my dyspraxia hasn’t gone away. Click here to read the rest of the story/

2020 Disability Awareness Month and Observance Calendar

The calendar includes major special needs awareness months, weeks, and days. Most websites include awareness toolkits, promotional materials and fact sheets.  This page focus is on awareness activities that impact people with intellectual and developmental disabilities only.

January

January (Month)

National Birth  Defects Month

January (Week)

January 19-25- Special Education Week

January (Day)

January 4- World Braille Day

January 20- International Day of Acceptance

January 24- Moebius Syndrome Awareness Day

February

February (Month)

Turner Syndrome Awareness Month

February (Day)

February 15- International Angelman Day

February 28- Rare Disease Day

March

March (Month)

Brain Injury Awareness Month

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

National Early Intervention Awareness Month

Kidney Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March (Day)

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 3- World Hearing Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

April

April (Day)

April 1- Paraprofessional Appreciation Day

April 2- World Autism Awareness Day 

May

May (Month)

Better Hearing and Speech Month

Early Intervention Awareness Month

Ehlers-Danlos Awareness Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

Prader Willi Syndrome Awareness Month

Williams Syndrome Awareness Month

May (Day)

May 1- Global Developmental Delay Day

May (Week)

May 4-6 Children Mental Health Awareness Week

May 15- Tuberous Sclerosis Global Awareness Day

May 5-12- Cri du Chat Awareness Week

June

June (Month)

Aphasia Awareness Month

June (Week)

Helen Keller Deaf-Blind Awareness Week (Last Sunday in June)

Scoliosis Awareness Month

June (Day)

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

Tourette Syndrome Awareness Month

July

July (Day)

July 14- Disability Pride Parade (NY)

July 14- Disability Awareness Day (UK)

July 22- National Fragile X Syndrome Awareness Day

July 26- American Disabilities Act Day (30 Year Anniversary) 

September

September (Month)

Chiari Awareness Month

Craniofacial Acceptance Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

Sepsis Awareness Month

September (Week)

September 13-19- Direct Support Professional Week

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

October

October (Month)

ADHD Awareness Month

Disability History Month

Down Syndrome Awareness Month

Dysautonomia Awareness

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October (Day)

October 5- World Teacher’s Day

October 6- World Cerebral Palsy Day

October 10- National Depression Screening Day

October 15- White Cane Awareness Day

October (Week)

October 4-10- Mental Illness Awareness Week 

October 5-11 Dyspraxia Awareness Week 

October 13-19 Invisible Disabilities Week

October 13-19 International OCD Awareness Week

October 19-23- National School Bus Safety Week

National Physical Therapy Month

Rett Syndrome Awareness Month

Special Needs Law Month

Spinal Bifida Awareness Month

November

November (Month)

22q Awareness Month

Epilepsy Awareness Month

November (Day)

November 1- LGS Awareness Day

November 4- National Stress Awareness Day

November 15- World Ohtahara Syndrome Awareness Day

December

December (Day)

December 2- National Special Education Day

December 3- International Day of Persons with Disabilities

December (Week)

December 1-7- Infantile Spasm