8

Which advice would you give to someone who has just been diagnosed with Von Hippel-Lindau Disease?

See some advice from people with experience in Von Hippel-Lindau Disease to people who have just been diagnosed with Von Hippel-Lindau Disease

Von Hippel-Lindau Disease advice

Advice for Someone Diagnosed with Von Hippel-Lindau Disease



If you have recently been diagnosed with Von Hippel-Lindau (VHL) disease, it is natural to feel overwhelmed and uncertain about what lies ahead. VHL is a rare genetic disorder that can affect various organs in the body, leading to the development of tumors. While this diagnosis may bring challenges, it is important to remember that you are not alone. With proper management and support, you can navigate this journey and live a fulfilling life. Here are some essential pieces of advice to help you on your path:


1. Seek Expert Medical Care



The first step after diagnosis is to find a healthcare team experienced in managing VHL. Look for doctors who specialize in genetic disorders, oncology, and the specific organs affected by VHL. These experts will guide you through the necessary screenings, treatments, and surveillance protocols. Regular check-ups and screenings are crucial to detect and manage any potential tumors or complications early on.


2. Educate Yourself



Knowledge is power when it comes to managing VHL disease. Take the time to learn about the condition, its symptoms, potential complications, and available treatment options. Understanding your condition will empower you to make informed decisions about your healthcare and actively participate in your treatment plan. Reliable sources such as medical journals, reputable websites, and patient support organizations can provide valuable information.


3. Build a Support Network



Surround yourself with a strong support system that includes family, friends, and fellow VHL patients. Connecting with others who share similar experiences can provide emotional support, practical advice, and a sense of community. Consider joining support groups, both online and offline, where you can share your concerns, ask questions, and learn from others who have faced similar challenges.


4. Prioritize Mental and Emotional Well-being



A diagnosis of VHL can bring about a range of emotions, including fear, anxiety, and sadness. It is essential to prioritize your mental and emotional well-being. Seek professional counseling or therapy if needed, as it can help you cope with the emotional impact of the disease. Engage in activities that bring you joy, practice stress management techniques, and maintain a positive outlook. Remember, taking care of your mental health is just as important as managing the physical aspects of VHL.


5. Adopt a Healthy Lifestyle



While VHL is a genetic condition, adopting a healthy lifestyle can play a significant role in managing the disease and promoting overall well-being. Eat a balanced diet rich in fruits, vegetables, whole grains, and lean proteins. Regular exercise can help improve your physical and mental health, so find activities that you enjoy and incorporate them into your routine. Avoid smoking and excessive alcohol consumption, as these habits can further increase health risks.


6. Stay Informed about Research and Clinical Trials



Stay updated on the latest advancements in VHL research and clinical trials. New treatments and therapies are continually being developed, and participating in clinical trials may provide access to innovative options. Discuss these possibilities with your healthcare team to determine if they are suitable for you.


7. Plan for the Future



Living with VHL requires long-term planning. Consider discussing family planning options with a genetic counselor, as VHL is an inherited condition. They can provide guidance on reproductive choices and prenatal testing. Additionally, ensure you have appropriate health insurance coverage and financial plans in place to manage the potential costs associated with ongoing medical care.


8. Be Proactive and Advocate for Yourself



Take an active role in your healthcare journey. Keep track of your medical records, ask questions during appointments, and communicate openly with your healthcare team. Be your own advocate and ensure your concerns are heard and addressed. Remember, you are an important part of the decision-making process, and your voice matters.



Receiving a diagnosis of Von Hippel-Lindau disease can be challenging, but with the right support and management, you can lead a fulfilling life. Surround yourself with a knowledgeable medical team, educate yourself about the condition, build a strong support network, prioritize your mental and emotional well-being, adopt a healthy lifestyle, stay informed about research, plan for the future, and be proactive in your healthcare. Remember, you are not defined by your diagnosis, and there is hope for a bright future ahead.


Diseasemaps
4 answers
Take it one moment, step, day at a time.

Posted May 16, 2017 by Kerry-Anne 1000
They have a great support group on facebook.
They can treat this successfully most of the time

Posted May 16, 2017 by Paul 1100
Review your abdominal images with a urologist. Ask questions. Schedule surgery if necessary. A partial nephrectomy is a harder recovery, but better in the long run than cryoablation. Review your FULL brain and spine MRI with a neurosurgeon. Ask questions. Make sure it is ordered as a FULL brain and spine, or some facilities won't image the sacrum. Schedule surgery if necessary. The longer you wait, the more nerve involvement occurs - and the less chance you will recover 100% of your nerve function. See a retinal oncologist, or a retinal specialist, at the be very least. We get just one set of peepers. Protect the heck out of them. Ask questions. See an ENT. Review your head CT images with them. Ask for a hearing test at least annually. If you are not comfortable at ANY time, GET A SECOND OPINION. You are your own best advocate. You know how you feel, how severe your symptoms are. Consider the advice of the experts, but in the end, the decision for treatment is yours. FIND GREAT doctors. Ask within the VHL community. You may have to drive some distance to get to the best docs, but the best is what you must demand!

Posted May 17, 2017 by Bobbi 1000

Von Hippel-Lindau Disease advice

Von Hippel-Lindau Disease life expectancy

What is the life expectancy of someone with Von Hippel-Lindau Disease?

6 answers
Celebrities with Von Hippel-Lindau Disease

Celebrities with Von Hippel-Lindau Disease

2 answers
Is Von Hippel-Lindau Disease hereditary?

Is Von Hippel-Lindau Disease hereditary?

3 answers
Is Von Hippel-Lindau Disease contagious?

Is Von Hippel-Lindau Disease contagious?

3 answers
Natural treatment of Von Hippel-Lindau Disease

Is there any natural treatment for Von Hippel-Lindau Disease?

1 answer
ICD9 and ICD10 codes of Von Hippel-Lindau Disease

ICD10 code of Von Hippel-Lindau Disease and ICD9 code

2 answers
Living with Von Hippel-Lindau Disease

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

5 answers
Von Hippel-Lindau Disease diet

Von Hippel-Lindau Disease diet. Is there a diet which improves the quality ...

4 answers

World map of Von Hippel-Lindau Disease

Find people with Von Hippel-Lindau Disease through the map. Connect with them and share experiences. Join the Von Hippel-Lindau Disease community.

Stories of Von Hippel-Lindau Disease

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 

Tell your story and help others

Tell my story

Von Hippel-Lindau Disease forum

VON HIPPEL-LINDAU DISEASE FORUM
Von Hippel-Lindau Disease forum
How many people in the world have this 

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