The regional overgrowth with predominant soft tissue component is already present at birth and most often affects the feet. [compva.com]

These symptoms are always present at birth, but might not be noticeable right away. [texaschildrens.org]

A venous malformation may present as a blue patch on the skin ranging to a soft blue mass. [ncbi.nlm.nih.gov]

Kristen Davis presents a copy of “Four Leaf Clovers”, a book about living with a rare disease, to PROS advocate Wilma Westenberg. [chanzuckerberg.com]

[…] the treatments your child's care team might recommend include: Drug therapy with sirolimus: Also known as rapamycin, this oral medication suppresses the immune system and slows the growth of abnormal lymphatic vessels that cause the vascular anomalies present [childrenshospital.org]

• Splenomegaly

  Splenomegaly MedGen UID: 52469 •Concept ID: C0038002 • Finding Abnormal increased size of the spleen. [ncbi.nlm.nih.gov]

  […] first and second toes Wide space between 1st, 2nd toes Wide space between first and second toes Wide-spaced big toe Widely spaced 1st-2nd toes Widely spaced first and second toes Widened gap 1st-2nd toes Widened gap first and second toe [ more ] 0001852 Splenomegaly [rarediseases.info.nih.gov]

• Excitement

  Wen Yih Aw of The University of North Exciting news for the CLOVES/PROS community: FDA approves Novartis Vijoice (alpelisib) as first and only treatment for select patients with PIK3CA-Related Overgrowth Spectrum (PROS)May 27, 2022 Vijoice is first approved [clovessyndrome.org]

What are the treatment options for CLOVES syndrome? There is no cure for CLOVES syndrome, but experienced vascular anomaly specialists can manage or prevent symptoms with the right medical and surgical care. [childrenshospital.org]

The doctor will put together a treatment plan for your child. Related articles PIK3CA-related segmental overgrowth [texaschildrens.org]

treatment to specifically address the root cause of PROS conditions in select patients 2 years of age and older1. [clovessyndrome.org]

This rare condition has no specific treatment and a poor survival rate. [en.wikipedia.org]

Standard Therapies Treatment The management of CLOVES syndrome can be very challenging and requires an interdisciplinary team of physicians with experience in overgrowth and vascular anomalies. [rarediseases.org]

PMID: 20537357 Prognosis Yan W, Zhang B, Wang H, Mo R, Jiang X, Qin W, Ma L, Lin Z Hereditas 2021 Jun 1;158(1):18. doi: 10.1186/s41065-021-00184-y. [ncbi.nlm.nih.gov]

[…] malformation Abnormality of the musculoskeletal system Cranial hyperostosis Scoliosis Abnormality of the nervous system Spinal dysraphism Tethered cord Growth abnormality Hemihypertrophy Lower limb asymmetry Overgrowth Neoplasm Lipoma Nephroblastoma Etiology [ncbi.nlm.nih.gov]

There is no cure for CLOVES syndrome, but experienced vascular anomaly specialists can manage or prevent symptoms with the right medical and surgical care. [childrenshospital.org]

French doctor Guillaume Canaud[1] published an article in Nature that demonstrate the efficacy of BYL719 (From cancer), an inhibitor of PIK3CA, in preventing and improving organ dysfunction. [en.wikipedia.org]

This promising drug significantly reduced the size of the lymphangioma and prevented progression of the tissue overgrowth in the gluteal region. [pubmed.ncbi.nlm.nih.gov]

This will also prevent cutaneous and visceral morbidities, neurological deficit, pain, breathing difficulties, and possible complications such as hemoptysis, gastrointestinal bleeding or obstruction, and pulmonary embolism arising from vascular anomalies [ncbi.nlm.nih.gov]