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While everyone’s experience with this rare disease is unique, it’s important to know that you are not alone

Watch other families impacted by PROS share their unique stories and perspectives.

Allison, living with FAVA

After years of searching for answers about her chronic pain, Allison finally received her diagnosis of FAVA, a PROS condition, at age 39 years. In an effort to help raise awareness and prevent others from suffering similar consequences related to misdiagnosis, Allison shares the details of her complicated diagnosis journey.

Gwen, living with PROS

Gwen is diagnosed with PROS. She shares her advice for caregivers and people recently diagnosed with PROS, as well as helpful things to keep in mind when talking to your doctor.

Kendall, living with FAVA

Initially diagnosed with a venous malformation at age 8 years, Kendall received his official diagnosis of FAVA, a PROS condition, as a teen. Kendall reveals the daily physical and emotional impacts of living with this rare disease and the one change he made that helped.

Lauren, parent of a child with MCAP/M-CM

Lauren’s daughter, Emerson, was diagnosed with MCAP/M-CM, a PROS condition, at 7 months old. Lauren opens up about the emotional toll of taking care of her daughter and offers advice for other caregivers in similar situations.

Robynn, parent of a child with CLOVES syndrome

Robynn’s daughter, Elena, was diagnosed with CLOVES syndrome, a PROS condition, at age 11 years. Through her personal experience as Elena’s primary caregiver, Robynn shares tips she has learned from advocating for her child.

  • KTS (Klippel-Trenaunay Syndrome)

  • CLOVES syndrome (Congenital Lipomatous Overgrowth, Vascular malformations, Epidermal nevi, Scoliosis/skeletal and spinal)

  • ILM (Isolated Lymphatic Malformation)

  • MCAP or M-CM (Megalencephaly-Capillary Malformation)

  • HME (HemiMegalEncephaly)/DMEG (Dysplastic MEGalencephaly)/Focal cortical dysplasia type II

  • HHML (HemiHyperplasia-Multiple Lipomatosis)

  • FIL (Facial Infiltrating Lipomatosis)

  • FAVA (FibroAdipose Vascular Anomaly)

  • Macrodactyly

  • Muscular HH (HemiHyperplasia)

  • FAO (FibroAdipose hyperplasia or Overgrowth)

  • CLAPO syndrome (Capillary malformation of the lower lip, Lymphatic malformation of the face and neck, Asymmetry of the face and limbs, and Partial or generalized Overgrowth)

  • Epidermal nevus, benign lichenoid keratosis, or seborrheic keratosis

  • Other conditions may be identified and characterized as PROS. Talk to your doctor to find out if your condition is a PROS condition

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