NF1 Impact on Intimacy

How can NF impact intimacy? 

Studies have shown that people with NF1 may experience concerns related to intimacy but feel uncomfortable talking about them with their partner(s) or healthcare providers. If you have experienced any of these concerns below, know that you are not alone. Because NF1 impacts people differently, it can affect intimacy in a variety of ways physically, emotionally, and socially. Fortunately, there are many sources of support and help to navigate these concerns.   


Because NF can include outwardly visible features, people with NF may experience feelings of embarrassment, self-consciousness, anxiety, or depression related to their physical appearance. This can include any feature of NF that may impact outward appearances including cutaneous neurofibromas, café-au-lait spots, plexiform neurofibromas, scoliosis, or other differences related from treatment of NF1 features.

Pain or Tiredness

Some people experiencing pain or tiredness may find it hard to enjoy physically or emotionally intimate interactions. 

Intellectual or Learning Differences

Some people may experience feelings of self-consciousness related to the learning differences that are common in people with NF1. Some people may feel embarrassed if they feel they are unable to keep up with a partner intellectually. 

Hurtful Reactions from Others

NF may impact a person’s confidence and interest in engaging with other people due to fear of negative reactions including staring or hurtful comments. This may make people hesitant to initiate both friendships and romantic relationships. 

Future Family Planning

Some people may be concerned that their neurofibromas may impact current or future relationships. This can include anxiousness when bringing up how NF1 can be passed down in families.  

Sexual Activity

The physical changes that may occur with NF1 can make physical intimacy more challenging for some people. 

What should I do if I am having intimacy concerns?  

  •  An important starting point in managing intimacy concerns is being willing to talk about them. Talk to someone that you feel safe and comfortable with, such as your partner, a friend, family member, or healthcare professional. Some people may prefer to discuss concerns more anonymously or in an online group.
  • If you have concerns related to the physical features of NF, an NF specialist or another medical specialist, like a plastic surgeon or dermatologist, may be able to address these concerns. 
  • If you are experiencing feelings of anxiety, embarrassment, self-consciousness, or depression it may be helpful to discuss these concerns with a partner, support group, mental health counselor, or NF specialist. Connecting with other people with NF to hear their stories and advice may be helpful. There are many ways to get involved in the NF community and participate in support groups.  
  • If you are having symptoms that affect sexual activity, it is important to share these concerns with a doctor. Keep in mind that physicians may not ask about intimacy concerns if you do not bring them up, so you will need to be your own advocate.
  • Pain and tiredness may be managed best with the help of your healthcare provider and may include a variety of medications or therapies. 
  • If you are concerned about passing NF to future children, a discussion with a genetic counselor may be helpful to understand your options. 

How do I tell my doctor I have intimacy concerns?  

Intimacy and sexual health are important aspects of overall health and well-being. It may feel awkward bringing this up during an appointment, but medical providers should be comfortable addressing all areas of life that may impact your overall health. Some ways to bring this topic up with you doctor could include:

“I have some questions about how NF1 may be affecting my relationships.”

“I’m finding that NF1 is getting in the way of intimacy, is that something I can talk to you about?”

“I am worried that NF1 may affect my relationships and/or sexual health. What things should I be looking for? Is there any way I can plan for these changes?”

“I am not sure how to talk with my partner about NF1 and its impact on intimacy.”