7

Living with VACTERL/VATER association. How to live with VACTERL/VATER association?

Can you be happy living with VACTERL/VATER association? What do you have to do to be happy with VACTERL/VATER association? Living with VACTERL/VATER association 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 VACTERL/VATER association

Living with VACTERL/VATER association

Living with VACTERL/VATER Association


VACTERL/VATER association is a rare condition characterized by the presence of multiple birth defects affecting various organ systems. The acronym stands for:



  • Vertebral anomalies

  • Anal atresia

  • Cardiac defects

  • Tracheoesophageal fistula

  • Esophageal atresia

  • Renal (kidney) anomalies

  • Limb abnormalities


Living with VACTERL/VATER association can present unique challenges, but with proper care and support, individuals with this condition can lead fulfilling lives. Here are some important aspects to consider:



Medical Management


Due to the complex nature of VACTERL/VATER association, a multidisciplinary approach involving various medical specialists is crucial. Regular check-ups, diagnostic tests, and imaging studies are necessary to monitor the different organ systems affected. Treatment options may include surgeries, medications, and therapies tailored to each individual's specific needs. It is important to follow the medical advice and recommendations provided by the healthcare team.



Emotional Support


Living with a rare condition like VACTERL/VATER association can be emotionally challenging. It is essential to have a strong support system in place, including family, friends, and support groups. Connecting with others who have similar experiences can provide a sense of belonging and understanding. Additionally, seeking professional counseling or therapy can help individuals and their families cope with the emotional impact of the condition.



Education and Advocacy


Education plays a vital role in managing VACTERL/VATER association. It is important to learn about the condition, its associated complications, and available resources. This knowledge empowers individuals and their families to actively participate in their healthcare decisions and advocate for their needs. Keeping open lines of communication with healthcare providers and staying informed about the latest research and advancements can contribute to better outcomes.



Physical and Occupational Therapy


Many individuals with VACTERL/VATER association may benefit from physical and occupational therapy. These therapies aim to improve mobility, strength, coordination, and independence. Physical therapy focuses on gross motor skills, while occupational therapy addresses fine motor skills and activities of daily living. Working closely with therapists can help individuals achieve their maximum potential and enhance their overall quality of life.



Nutrition and Digestive Health


As VACTERL/VATER association often involves gastrointestinal anomalies, proper nutrition and digestive health are crucial. Some individuals may require specialized diets, feeding tubes, or other interventions to ensure adequate nutrition and growth. Consulting with a registered dietitian or nutritionist can help develop a personalized nutrition plan that meets specific needs and promotes optimal health.



Transition to Adulthood


As individuals with VACTERL/VATER association reach adulthood, transitioning from pediatric to adult healthcare services is important. It is essential to plan and coordinate this transition with the healthcare team to ensure continuity of care. Adult specialists familiar with the condition should be identified, and a comprehensive healthcare plan should be established to address ongoing medical needs.



Remember, every individual with VACTERL/VATER association is unique, and their experiences may vary. It is important to consult with healthcare professionals for personalized advice and guidance.


Diseasemaps
1 answer

Living with VACTERL/VATER association

VACTERL/VATER association life expectancy

What is the life expectancy of someone with VACTERL/VATER association?

2 answers
Celebrities with VACTERL/VATER association

Celebrities with VACTERL/VATER association

1 answer
Is VACTERL/VATER association hereditary?

Is VACTERL/VATER association hereditary?

2 answers
Is VACTERL/VATER association contagious?

Is VACTERL/VATER association contagious?

2 answers
Natural treatment of VACTERL/VATER association

Is there any natural treatment for VACTERL/VATER association?

1 answer
ICD9 and ICD10 codes of VACTERL/VATER association

ICD10 code of VACTERL/VATER association and ICD9 code

2 answers
VACTERL/VATER association diet

VACTERL/VATER association diet. Is there a diet which improves the quality ...

1 answer
History of VACTERL/VATER association

What is the history of VACTERL/VATER association?

1 answer

World map of VACTERL/VATER association

Find people with VACTERL/VATER association through the map. Connect with them and share experiences. Join the VACTERL/VATER association community.

Stories of VACTERL/VATER association

VACTERL/VATER ASSOCIATION STORIES
VACTERL/VATER association stories
  *Scroll down for english version*   Mein Sohn Max erhielt kurz nach der Geburt die Diagnose VACteRl Assoziation.  Seine Symptome bis dato: - drei verformte Wirbel im Brustbereich (angeblich ohne größere Auswirkungen), Syringomyelie 2014, ...
VACTERL/VATER association stories
My son is 1 year old and has a diagnosis of the VCTERL

Tell your story and help others

Tell my story

VACTERL/VATER association forum

VACTERL/VATER ASSOCIATION 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