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Living with Joubert Syndrome. How to live with Joubert Syndrome?

Can you be happy living with Joubert Syndrome? What do you have to do to be happy with Joubert Syndrome? Living with Joubert Syndrome 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 Joubert Syndrome

Living with Joubert Syndrome

Living with Joubert Syndrome


Joubert Syndrome is a rare genetic disorder that affects the development of the brainstem. It is characterized by a distinctive brain malformation known as the "molar tooth sign" on brain imaging. Individuals with Joubert Syndrome often experience a range of physical, cognitive, and behavioral challenges. While living with Joubert Syndrome can present unique obstacles, there are strategies and support systems that can help individuals lead fulfilling lives.



Medical Management:


It is crucial for individuals with Joubert Syndrome to have regular medical care. This includes visits to specialists such as neurologists, ophthalmologists, and geneticists who can monitor and manage specific symptoms. Medications may be prescribed to address seizures, breathing difficulties, or other associated conditions. Regular check-ups and screenings can help detect and address any emerging health concerns.



Therapies and Interventions:


Early intervention is key for individuals with Joubert Syndrome. Occupational therapy, physical therapy, and speech therapy can help address motor delays, improve coordination, and enhance communication skills. These therapies can be tailored to individual needs and goals, promoting independence and overall well-being. Assistive devices, such as communication aids or mobility aids, may also be beneficial in daily life.



Educational Support:


Children with Joubert Syndrome may require specialized educational support. Individualized Education Programs (IEPs) can be developed to address their unique learning needs. Collaborating with teachers, therapists, and school administrators can ensure appropriate accommodations and modifications are in place to optimize learning and social experiences. It is important to foster a supportive and inclusive educational environment.



Emotional and Social Well-being:


Living with Joubert Syndrome can sometimes lead to feelings of isolation or frustration. Building a strong support network is essential. Connecting with support groups, both online and offline, can provide a sense of community and understanding. Engaging in activities and hobbies that bring joy and fulfillment can also contribute to emotional well-being. It is important to celebrate achievements and focus on strengths rather than limitations.



Family and Caregiver Support:


Joubert Syndrome can impact the entire family. It is crucial for family members and caregivers to seek support and resources. Connecting with other families facing similar challenges can provide valuable insights and emotional support. Respite care services can offer temporary relief for caregivers, allowing them to recharge and take care of their own well-being.



Advocacy and Awareness:


Advocating for individuals with Joubert Syndrome and raising awareness about the condition can help promote understanding and inclusion. Participating in local or national organizations dedicated to rare diseases can provide opportunities to make a difference. Sharing personal experiences and educating others can contribute to a more supportive and inclusive society.



Conclusion:


Living with Joubert Syndrome requires a multidimensional approach that encompasses medical management, therapies, educational support, emotional well-being, family support, and advocacy. While challenges may arise, individuals with Joubert Syndrome can lead meaningful lives with the right support systems in place. By focusing on strengths, fostering a supportive environment, and embracing individuality, individuals with Joubert Syndrome can thrive and contribute to their communities.


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4 answers
Yes you can be happy with Joubert syndrome. As far as advice on how, stop comparing, and accept yourself for who you are, different is not less. Never give up, there is always hope as long as you don't stop trying.

Posted Mar 6, 2017 by Brett 1120
Living with Joubert syndrome can be tough at times but as you grow older it’s not that bad. I love meeting other people with Joubert syndrome and there’s even foundations to support people with Joubert syndrome like the Joubert syndrome and related disorders foundation, Joubert syndrome in Australia. It can be tough too because ocular motor apraxia sometimes comes with Joubert syndrome and duo to that I have to turn my head to the right to see things around me and sometimes (rarely) Joubert syndrome comes with nystagmus and duo to that it makes it really hard to read paragraphs! I flap my hands a lot too! I am proud of who I am! I met several people with Joubert syndrome thanks to the Joubert syndrome and related disorders foundation but most of the people were found randomly by me on social media! I worked so hard to where I am today with all the therapy’s I had to do and if I especially didn’t have speech therapy I wouldn’t be able to speak clearly like I am today. I am so grateful for everything god has offered me with my battle with Joubert syndrome!!

Posted Jun 7, 2021 by Brookelyn 100
Translated from spanish Improve translation
Each person who decides if you can live happy or sad... only with the fact of being alive is already something great...

Posted Aug 3, 2017 by Evelin 2000

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We have 5 adult children. 2 of our daughters have Joubert Syndrome. Suzie was born in 1981 and Nancy was born in 1986.  They are #2 and #3 in our family.  No one else on either side of our families have anything like Joubert Syndrome. 
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IN 2011 MY CHILD WAS SUFFERING FROM JOUBERT SYNDROME(aFTER DIAGNOSIS OF MRI) DOCTOR SAYS HE NEVER WALK /AND SPEAK. BUT IT IS COMPLETELY WRONG. MY CHILD IS NOW GOING TO SCHOOL HE IS IN CLASS ONE. ONLY DELAY PROBLEM. HE CAN DO EVERY THING BUT DELAY OF...

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