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Living with Von Hippel-Lindau Disease. How to live with Von Hippel-Lindau Disease?

Can you be happy living with Von Hippel-Lindau Disease? What do you have to do to be happy with Von Hippel-Lindau Disease? Living with Von Hippel-Lindau Disease 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 Von Hippel-Lindau Disease

Living with Von Hippel-Lindau Disease

Living with Von Hippel-Lindau Disease


Von Hippel-Lindau (VHL) disease is a rare genetic disorder that affects various parts of the body, primarily leading to the development of tumors and cysts. Living with VHL can present unique challenges, but with proper management and support, individuals can lead fulfilling lives. Here are some important aspects to consider when living with Von Hippel-Lindau Disease:



1. Education and Awareness


Understanding VHL and its potential impact on your health is crucial. Educate yourself about the disease, its symptoms, and the recommended screenings and treatments. Stay updated with the latest research and advancements in VHL management. This knowledge will empower you to make informed decisions and actively participate in your healthcare.



2. Regular Medical Check-ups


Regular medical check-ups are essential for monitoring the progression of VHL-related tumors and cysts. Work closely with a team of healthcare professionals experienced in VHL management, including geneticists, oncologists, neurologists, and ophthalmologists. They will help develop a personalized surveillance plan to detect and address any potential issues at an early stage.



3. Genetic Counseling and Family Planning


VHL is an inherited condition, so it is important to consider genetic counseling and family planning options. A genetic counselor can provide information about the chances of passing VHL to your children and discuss available reproductive options, such as preimplantation genetic diagnosis (PGD) or adoption. This can help you make informed decisions about starting or expanding your family.



4. Emotional Support


Living with a chronic condition like VHL can be emotionally challenging. Seek emotional support from friends, family, or support groups who understand your experiences. Sharing your feelings and concerns can provide comfort and help you cope with the emotional impact of the disease. Consider joining VHL support groups or online communities to connect with others facing similar challenges.



5. Healthy Lifestyle Choices


Adopting a healthy lifestyle can positively impact your overall well-being. Maintain a balanced diet rich in fruits, vegetables, and whole grains. Regular exercise, as recommended by your healthcare team, can help improve your physical and mental health. Avoid smoking and excessive alcohol consumption, as they can further compromise your health.



6. Managing Symptoms and Complications


Depending on the location and size of VHL-related tumors and cysts, you may experience various symptoms and complications. Work closely with your healthcare team to manage these issues effectively. They may recommend surgical interventions, medications, or other treatments to alleviate symptoms and prevent further complications.



7. Financial Considerations


VHL management can involve significant medical expenses. Explore available financial resources, such as health insurance, disability benefits, and patient assistance programs. Consult with a financial advisor to understand your options and plan for potential healthcare costs.



8. Stay Positive and Seek Joy


While living with VHL can be challenging, it is important to maintain a positive outlook and seek joy in life. Engage in activities that bring you happiness and fulfillment. Surround yourself with a supportive network of loved ones who can provide encouragement and help you navigate the ups and downs of living with VHL.



Remember, each person's experience with VHL is unique, and it is important to consult with your healthcare team for personalized advice and guidance. By staying informed, seeking support, and actively managing your health, you can lead a fulfilling life while living with Von Hippel-Lindau Disease.


Diseasemaps
5 answers
Have hope. Believe in a future.

Posted May 16, 2017 by Kerry-Anne 1000
Yes you can be happy. Take one day at a time. Its out of your control. Dont worry
Get tested yearly.

Posted May 16, 2017 by Paul 1100
Living with VHL is extremely hard and depressing. I currently still cannot be happy living with this disease. I've tried everything and nothing helps me be happy about this at all.

Posted May 17, 2017 by Terry 600
Yes, you can absolutely be happy living with VHL. If you are feeling down due to loss of physical capacity or cognitive abilities, talk to your physician about medication to help before you fall into a deep depression. It can be very disheartening to get 'bad news' at every appointment, especially when we average 6+ appointments per year. Count your blessings. I remind myself often that my situation could always be much worse. I am not terminally ill. In most cases, a surgical procedure can be performed to remove the tumor. Keeping a positive attitude is 99% of the battle! You'll have bad days, we all do - but our life expectancy has increased greatly the past several years, and the miracle of modern medicine is amazing!

Posted May 17, 2017 by Bobbi 1000

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VON HIPPEL-LINDAU DISEASE STORIES
Von Hippel-Lindau Disease stories
I first found out I had VHL in 2007. I have always been healthy never broke a bone or been in the hospital never felt sick. I developed a tumor in my right kidney in late 2005. Doctors sugested removing the whole kidney and the cancer would be gone. ...
Von Hippel-Lindau Disease stories
Dear friends dont hide yourselves. We are a family vhlfa alliance.   Join us +6944969603 +2102711306
Von Hippel-Lindau Disease stories
My vhl experience begins around 12 yrs old. I woke up one day and was having blurry vision in my left eye. My mother took me to the eye doctor who sent me to a specialist. This Dr was fresh out of med school and I was one of his first patiants. He lo...
Von Hippel-Lindau Disease stories
At first my family thought we had pheochromocytoma, but when my cousin died NIH found out we had VHL. I was genetically tested in the fourth or fifth grade and do have the gene. My brother passed away from the disease, my mother has had numerous surg...
Von Hippel-Lindau Disease stories
My husband was diagnosed in 2004 with vhl has had double adreanalectomy kidney spine brain op and loss his sight due to vhl... 3 children also carry this gene and have had several operations and there also grandchildren as well 

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