Supporting Someone With Porphyria

Many people with porphyria are lucky to have supportive friends, parents, spouses and siblings who provide emotional support, advocate for them in healthcare settings and at school, and help with physical and financial needs. If you are one of these supportive people- thank you, you make a huge difference in our lives.

Helping someone with porphyria can have a huge impact on your life. We know that porphyria can affect your relationships, social life, employment and well-being too. We want you to know that it is normal to sometimes feel:

  • Frustrated

  • Overwhelmed

  • Resentful

  • Guilty

  • Angry

  • Sad

The information and resources we provide on this website can help you understand and manage porphyria, but we think it's important for you to also be aware of resources that focus on you and your well-being too. There are some fantastic organizations in Canada that focus on helping family/friends who are supporting a loved one who is sick.

We encourage you to reach out to these organizations if you are feeling stressed or overwhelmed. There are many caregivers who are going through similar situations and it can be a relief to connect with others.