Patient and Caregiver Stories

Although every patient and caregiver’s experience with PIK3CA-Related Overgrowth Spectrum (PROS) is unique, they need to know they are not alone

Help support your patients and their caregivers by sharing the following videos that feature the stories and perspectives of families impacted by PROS.


Allison, diagnosed with FAVA

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


Gwen, diagnosed with PROS

Gwen shares her advice for caregivers and patients recently diagnosed with PROS, as well as helpful things to keep in mind when talking to health care professionals.


Kendall, diagnosed with FAVA

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


Lauren, parent of a child diagnosed with MCAP or M-CM

Lauren’s daughter, Emerson, was diagnosed with MCAP or M-CM, a PROS disorder, at age 7 months. Lauren discusses the emotional toll of taking care of her daughter and offers advice for other caregivers in similar situations.


Robynn, parent of a child diagnosed with CLOVES syndrome

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

CLOVES, congenital lipomatous overgrowth, vascular malformations, epidermal nevi, scoliosis/skeletal and spinal; FAVA, fibroadipose vascular anomaly; MCAP or M-CM, megalencephaly-capillary malformation.