Can people with Von Hippel-Lindau Disease work? What kind of work can they perform?

See how people with experience in Von Hippel-Lindau Disease give their opinion about whether people with Von Hippel-Lindau Disease can work and what kind of jobs are more appropriated for people with Von Hippel-Lindau Disease

Can people with Von Hippel-Lindau Disease work?

Von Hippel-Lindau (VHL) disease is a rare genetic disorder that affects multiple organs and systems in the body. It is caused by mutations in the VHL gene, which leads to the development of tumors and cysts in various parts of the body. While VHL disease can present significant challenges, many individuals with this condition are able to work and lead fulfilling professional lives.

Impact of VHL Disease on Employment

The impact of VHL disease on employment varies depending on the severity of symptoms, the specific organs affected, and the individual's overall health. Some individuals with VHL disease may experience more significant limitations that can affect their ability to work, while others may have milder symptoms that do not interfere with their professional lives.

Workplace Accommodations

For individuals with VHL disease, workplace accommodations can play a crucial role in enabling them to perform their job duties effectively. Accommodations may include flexible work hours, modified workstations, or the provision of assistive devices. These accommodations can help individuals manage symptoms such as fatigue, pain, or mobility issues, allowing them to continue working.

Types of Work

The type of work that individuals with VHL disease can perform depends on their specific symptoms, overall health, and any limitations they may have. It is important for individuals with VHL disease to choose a career that aligns with their abilities and accommodates their needs. Here are some examples of potential work options:

Office-based Jobs: Many individuals with VHL disease can pursue office-based jobs that involve tasks such as administration, data entry, customer service, or project management. These roles often provide a controlled environment and may offer flexibility in terms of work hours.

Remote Work: With the increasing availability of remote work opportunities, individuals with VHL disease can explore jobs that can be performed from home. This can provide greater flexibility and reduce the need for commuting, which may be beneficial for those with mobility or fatigue-related challenges.

Consulting or Freelancing: Some individuals with VHL disease may choose to work as consultants or freelancers, offering their expertise in a specific field. This allows for greater control over work hours and workload, providing flexibility to manage medical appointments or treatments.

Entrepreneurship: Starting a business or becoming self-employed can be an attractive option for individuals with VHL disease. It allows for greater flexibility in managing work schedules and adapting the business to accommodate specific needs.

Advocacy and Non-Profit Work: Many individuals with VHL disease find fulfillment in working for advocacy organizations or non-profit groups that focus on raising awareness, supporting research, or providing assistance to individuals with similar conditions. These roles can provide a sense of purpose and allow individuals to make a positive impact.

Supportive Work Environment

Creating a supportive work environment is essential for individuals with VHL disease to thrive in their careers. Employers can play a crucial role in ensuring that necessary accommodations are provided, promoting understanding among colleagues, and fostering an inclusive workplace culture. This can help individuals with VHL disease feel supported and empowered to excel in their chosen profession.

Conclusion

While Von Hippel-Lindau Disease can present challenges, many individuals with this condition are able to work and contribute to the workforce. The ability to work may vary depending on the severity of symptoms and individual circumstances. With appropriate workplace accommodations and a supportive environment, individuals with VHL disease can pursue a wide range of careers and lead fulfilling professional lives.

Diseasemaps

I believe it depends on the line of work you are in will allow you to be able to work. I personally did a lot of walking up and down stairs in collections that I have severe vertigo and nausea.
I think maybe 25% of persons with VHL work and work efficiently

Posted May 16, 2017 by Terry 600

Yes they can work but have the limitations of sickness and surgeries. They need to have time off of work. So mainly working from home would be best. But if you are on a disability pension odsp. They take 50% of what you make. People with vhl should be careful of immune suppresent jobs and heavy lifting.

Posted May 16, 2017 by Kerry-Anne 1000

Yes and sometimes no. Depends on symptoms

Posted May 16, 2017 by Paul 1100

I believe working is possible if symptoms can be kept under control. If several surgeries are necessary, it gets more difficult to work physically. If a vast array of medications are necessary to keep symptoms under control, that can affect cognitive abilities and level of concentration. I think people with VHL can work in any field as long as they are able to physically and mentally manage it, along with their symptoms

Posted May 17, 2017 by Bobbi 1000

My husband worked as a pipefitter on submarines for almost forty years. He had brain tumors, retinal angiomas, and kidney tumors during that time. He had time off from work for medical care but otherwise worked his regular hours and then some.

Posted Jan 15, 2018 by Ronalee 150