Family Planning and VHL: Navigating Choices with Confidence and Care
Planning a family is a deeply personal decision. For people with VHL, it can come with unique questions and concerns. Because VHL is a hereditary condition, many individuals and families find themselves navigating not only the usual choices around parenthood but also the added layer of genetics.
The good news? With advances in medical care and reproductive technology, there are more options than ever before. If you’re thinking about starting or growing your family, you don’t have to do it alone. There are tools, resources, and people ready to help you make informed decisions that align with your values and goals.
How VHL Affects Family Planning
VHL is an autosomal dominant condition, which means that if one parent has a variation in the VHL gene, each child has a 50% chance of inheriting it. Understandably, this can bring up a range of emotions, from worry about passing the condition on, to a stronger desire to plan carefully and intentionally.
These conversations around family planning are deeply personal. For some, the possibility of transmission may weigh heavily. For others, it’s simply one of many factors to consider.
What VHL Can Mean for Reproductive Health
VHL can affect people differently, and that includes how it shows up in reproductive health. Both men and women with VHL can develop benign tumors (called cystadenomas) in the reproductive organs. These are usually harmless and don’t cause symptoms.
But in some men, they can block sperm flow and cause fertility issues – often treatable with surgery. In women, similar lesions on the broad ligament near the fallopian tubes usually don’t interfere with fertility, but they do need to be carefully evaluated and monitored.
For women who are pregnant or thinking about becoming pregnant, there are additional concerns. Pregnancy involves major hormonal shifts and the extent to which these could affect VHL-related tumors is not fully known. That’s why it’s so important to work closely with a care team that understands VHL. With the right support, women with VHL can go on to have healthy pregnancies.
In some cases, your medical team might recommend extra monitoring like more frequent eye exams, MRIs (without contrast) to check for brain or spinal tumors, or screenings for adrenal tumors (pheochromocytomas), which can be risky during pregnancy. And if certain lesions are present, a C-section might be the safest way to deliver.
Genetic Counseling: A Key Step in the Journey
One of the most helpful things you can do when thinking about family planning is meet with a genetic counselor. These trained professionals can help you understand:
- How VHL is inherited and what a 50% chance of transmission really means
- Genetic testing options for you and your family
- Reproductive choices that can help lower the risk of passing on VHL
Genetic counselors are not there to make decisions for you – they’re there to walk you through the information, answer questions, and support you in whatever path you choose.
Exploring Your Options
If you’re looking for ways to reduce the chance of passing VHL on to your children, there are several options to consider:
Preimplantation Genetic Diagnosis (PGD) with IVF
This option involves using in vitro fertilization (IVF) to create embryos in a lab. A few cells are tested from each embryo, and only those without a variation in the VHL gene are implanted. PGD is a powerful tool for many families and offers peace of mind, but does come with financial, emotional, and medical considerations, so it’s important to talk through whether it’s the right fit for you.
Prenatal Testing
If you’re already pregnant, you can opt for tests like chorionic villus sampling (CVS) or amniocentesis to check whether the baby has inherited VHL. These tests can give you valuable information, but they are invasive and carry some risks. Your care team can help you understand the benefits and trade-offs.
Using Donor Eggs or Sperm
Choosing a donor who doesn’t carry a variation in the VHL gene removes the risk of passing it on. For some families, this can be a meaningful way forward.
Adoption
Adoption offers another path to parenthood without concerns about genetic inheritance. Some families find it to be a deeply fulfilling choice.
If You’re Taking Belzutifan: What to Know About Fertility and Pregnancy
If you’re on or considering belzutifan (Welireg), it’s important to understand how the medication may impact your reproductive plans. Belzutifan carries a warning for embryo-fetal toxicity, meaning it can harm a developing fetus. Because of that, pregnancy should be avoided during treatment and for at least one week after stopping the medication.
Breastfeeding is also not recommended while taking belzutifan or for a week after the last dose, since we don’t yet know how the drug might affect a nursing infant.
Another important note: belzutifan can make hormonal birth control less effective. That’s why non-hormonal birth control like condoms or a copper IUD is strongly recommended for anyone on belzutifan with a partner who could become pregnant.
If you think you might want children in the future, talk with your doctor about options like sperm or egg freezing before starting treatment. These are deeply personal decisions, and your care team can help you weigh the pros and cons.
The VHL Alliance Is Here for You
Family planning can feel overwhelming. The VHL Alliance is here to provide clear information, trusted resources, and meaningful support. Whether you’re looking for medical guidance, research updates, or just want to connect with others who understand what you’re going through, we’re in your corner.
There’s no “right” way to build a family with VHL – only the path that’s right for you. With the right support, open communication, and a care team that understands VHL, you can move forward with confidence.No matter where you are in your journey, we’re here to help. Don’t hesitate to reach out to us directly via [email protected] for assistance!
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