7

Living with Hyperekplexia. How to live with Hyperekplexia?

Can you be happy living with Hyperekplexia? What do you have to do to be happy with Hyperekplexia? Living with Hyperekplexia can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Hyperekplexia

Living with Hyperekplexia

Living with Hyperekplexia


Hyperekplexia, also known as startle disease, is a rare neurological disorder characterized by an excessive startle response. Living with Hyperekplexia can present unique challenges, but with proper management and support, individuals with this condition can lead fulfilling lives.



Understanding Hyperekplexia


Hyperekplexia is caused by genetic mutations that affect the functioning of certain neurotransmitters in the brain, particularly glycine receptors. This leads to an exaggerated startle reflex, causing sudden and involuntary muscle contractions in response to unexpected stimuli. These episodes can range from mild to severe and may result in falls, injuries, or even loss of consciousness.



Medical Management


Consulting with a healthcare professional experienced in treating Hyperekplexia is crucial for effective management. They may prescribe medications such as benzodiazepines or antiepileptic drugs to reduce the frequency and severity of startle episodes. Regular follow-ups and adjustments to medication dosages may be necessary to achieve optimal control.



Lifestyle Modifications


While there is no cure for Hyperekplexia, making certain lifestyle modifications can help minimize the impact of the condition:



  • Creating a safe environment: Removing potential hazards and ensuring a clutter-free living space can reduce the risk of injury during startle episodes.

  • Practicing relaxation techniques: Engaging in activities like deep breathing exercises, meditation, or yoga can help manage stress and anxiety, potentially reducing the frequency of startle responses.

  • Seeking emotional support: Connecting with support groups or counseling services can provide a platform to share experiences, seek advice, and cope with the emotional challenges associated with Hyperekplexia.

  • Exploring assistive devices: Depending on the severity of symptoms, assistive devices like mobility aids or safety equipment may be beneficial in maintaining independence and preventing falls.



Educational and Occupational Considerations


Individuals with Hyperekplexia may face certain challenges in educational and occupational settings. It is important to advocate for appropriate accommodations to ensure equal opportunities:



  • Informing teachers or employers: Educating teachers or employers about the condition can help them understand the need for certain adjustments, such as flexible schedules, modified tasks, or additional support.

  • Utilizing assistive technology: Assistive technology tools, such as voice recognition software or ergonomic adaptations, can enhance productivity and accessibility in academic or work environments.

  • Seeking legal protections: Familiarizing oneself with disability rights and seeking legal protections, such as the Americans with Disabilities Act (ADA), can ensure equal treatment and prevent discrimination.



Regular Monitoring and Support


Regular check-ups with healthcare professionals specializing in Hyperekplexia are essential to monitor the condition's progression and adjust treatment plans accordingly. Additionally, building a strong support network of family, friends, and healthcare providers can provide the necessary emotional and practical support to navigate the challenges of living with Hyperekplexia.



While Hyperekplexia may present obstacles, with proper management, lifestyle adjustments, and support, individuals with this condition can lead fulfilling lives and achieve their goals.


Diseasemaps
2 answers
Exercise helps me, and I believe you can be happy with the condition.

Posted Feb 27, 2017 by Kymberlee 1000

Living with Hyperekplexia

Hyperekplexia life expectancy

What is the life expectancy of someone with Hyperekplexia?

3 answers
Celebrities with Hyperekplexia

Celebrities with Hyperekplexia

1 answer
Is Hyperekplexia hereditary?

Is Hyperekplexia hereditary?

2 answers
Is Hyperekplexia contagious?

Is Hyperekplexia contagious?

2 answers
Natural treatment of Hyperekplexia

Is there any natural treatment for Hyperekplexia?

ICD9 and ICD10 codes of Hyperekplexia

ICD10 code of Hyperekplexia and ICD9 code

2 answers
Hyperekplexia diet

Hyperekplexia diet. Is there a diet which improves the quality of life of p...

2 answers
History of Hyperekplexia

What is the history of Hyperekplexia?

1 answer

World map of Hyperekplexia

Find people with Hyperekplexia through the map. Connect with them and share experiences. Join the Hyperekplexia community.

Stories of Hyperekplexia

HYPEREKPLEXIA STORIES
Hyperekplexia stories
My son, born April 2016, was diagnosed with Hyperekplexia five days after birth. He has it rather severely, with reoccurring apnoeas. Please feel free to contact me, especially if you are a new parent or have the GLRB mutation. 
Hyperekplexia stories
Born in 1944,Very stiff when awake and always jumpy when startled,fell a lot during child hood and did not protecked myself with hands,went all through school years still a bit stiff,but nobody understood in those days and we just got on with life.al...
Hyperekplexia stories
Hi, My daughter is 3yrs old. When she was born she had her first "episode". her episodes consist of her startling, going stiff, shaking. she used to have up to 60/70 a day. she has a very disturbed sleep and is a very anxious little girl. her doctors...
Hyperekplexia stories
 My name is Jared, when I was younger a lot of my falls were chalked up to me being an accident prone kid, after many years of wrongful diagnosis of psychological issues it was finally determined that my condition was indeed neurological, and the di...
Hyperekplexia stories
i developed what the Drs thought was epilepsy at 22 years of age. My symptoms have changed over the years to the stage where a fright makes me seize and fall, aslso don't even need noise these episodes just happen, I can have 1 a day to 10 or more a ...

Tell your story and help others

Tell my story

Hyperekplexia forum

HYPEREKPLEXIA FORUM

Ask a question and get answers from other users.

Ask a question

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map