18

What is the prevalence of Nemaline Myopathy?

How many people does Nemaline Myopathy affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Nemaline Myopathy

Nemaline Myopathy is a rare genetic disorder characterized by muscle weakness and low muscle tone. It affects an estimated 1 in 50,000 to 1 in 100,000 individuals worldwide. This condition can manifest in various forms, ranging from mild to severe, and can present at any age. Symptoms may include delayed motor development, respiratory difficulties, and feeding problems. Diagnosis is typically made through genetic testing and muscle biopsy. While there is currently no cure for Nemaline Myopathy, treatment focuses on managing symptoms and improving quality of life through physical therapy, respiratory support, and other supportive measures.

Nemaline Myopathy is a rare genetic disorder that affects skeletal muscles, causing muscle weakness and impaired muscle function. It is estimated to have a prevalence of approximately 1 in 50,000 individuals worldwide. This condition can manifest in various forms, ranging from mild to severe, and its onset can occur at any age.

Prevalence refers to the number of individuals affected by a particular condition within a specific population at a given time. In the case of Nemaline Myopathy, the prevalence is relatively low compared to other neuromuscular disorders. However, it is important to note that prevalence rates may vary across different populations and geographic regions.

Due to its rarity, Nemaline Myopathy often goes undiagnosed or misdiagnosed, leading to challenges in accurately determining its true prevalence. Ongoing research and advancements in genetic testing have contributed to a better understanding of this condition, potentially leading to more accurate prevalence estimates in the future.

While Nemaline Myopathy is a rare disorder, its impact on affected individuals and their families should not be underestimated. The medical community continues to work towards improved diagnosis, treatment, and support for those living with this condition.
Diseasemaps
2 answers
It is rare but with new research there are better ways to diagnose. They have found about 10 mutations now. And most have been in the last 16 years. Affects both men and women with an adult firm and also babies both make and female.
Some information says 1 in 50,000 live births but it could 1 in 100,000 depending on who's info you go by.

Posted Aug 29, 2017 by Mary Jo Draisma 2100

Prevalence of Nemaline Myopathy

Nemaline Myopathy life expectancy

What is the life expectancy of someone with Nemaline Myopathy?

5 answers
Celebrities with Nemaline Myopathy

Celebrities with Nemaline Myopathy

1 answer
Is Nemaline Myopathy hereditary?

Is Nemaline Myopathy hereditary?

3 answers
Is Nemaline Myopathy contagious?

Is Nemaline Myopathy contagious?

3 answers
Natural treatment of Nemaline Myopathy

Is there any natural treatment for Nemaline Myopathy?

1 answer
ICD9 and ICD10 codes of Nemaline Myopathy

ICD10 code of Nemaline Myopathy and ICD9 code

3 answers
Living with Nemaline Myopathy

Living with Nemaline Myopathy. How to live with Nemaline Myopathy?

4 answers
Nemaline Myopathy diet

Nemaline Myopathy diet. Is there a diet which improves the quality of life ...

4 answers

World map of Nemaline Myopathy

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

Stories of Nemaline Myopathy

NEMALINE MYOPATHY STORIES
Nemaline Myopathy stories
Doctors had never seen a person with this disease before me. They said it was very rare. Eventually I found others online and we are a like family. The nemaline myopathy support group on Facebook is a great resource community.
Nemaline Myopathy stories
ACTA1 ;mild to severe side; NIV/night, Gtube, spinal curvature >70, surgery never done/considered too risky by local surgs Complicated labor-ischemic hypoxia autistic, failure to thrive used to walk 2 to 5 years declining :(
Nemaline Myopathy stories
Tenho 20 anos , descobri a Nemalínica com 3 anos de idade através de biópsia. Atualmente sou cadeiras e faço uso de ventilação mecânica nasal .
Nemaline Myopathy stories
I was born with the condition Nemaline Myopathy & have always had muscle weakness, but I wasn't diagnosed with it until I was 43. I suffer from Ehlers Danlos Syndrome and in my long trail of searching for help and answers for that condition I ended u...

Tell your story and help others

Tell my story

Nemaline Myopathy forum

NEMALINE MYOPATHY 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