FREQUENTLY ASKED QUESTIONS
Q: Why are there two CLOVES entities? There is the CLOVES Syndrome Foundation and the CLOVES Syndrome Community.
A: The CLOVES Syndrome Foundation is an official 501c3 non-profit business entity established in Virginia. This organization was created to perform the following: (a) fundraise nationally allowing us to donate money to facilities that are performing overgrowth research, (b) provide member support by networking with families that have an overgrowth syndrome not limited to CLOVES, (c) Network with organizations, foundations, facilities, and/or doctors of CLOVES and overgrowth patients, and (d) raise awareness by developing and printing educational materials. To find more information about the CLOVES Community’s mission is to support, educate, empower, and improve the lives of those affected by CLOVES Syndrome, visit their website http://www.clovessyndrome.org
Q: Will the overgrown areas continue to grow after puberty?
A: Doctors have mentioned that the Cysts, Lesions, Malformations, Overgrowths will slow down and can even stop growing after puberty. We have heard from several CLOVES patients that this was not the case for them, some slowed, and some continued to grow.
Q: Do CLOVES Syndrome patients suffer from chronic pain?
A: Yes and No. Currently some patients are young and cannot speak to let us know if they are in pain. With that in mind some of these children do not appear to have any problems. There are some patients that tell us pain is very common for them and then we have children with CLOVES, which cry out in pain frequently.
Q: Are port wine stains inherited or a genetic defect?
A: There is no official answer for this one but the general consensus is no. There are some patients with and without port wine stains in the family.
Q: My child seems to get sick frequently, is this common with CLOVES?
A: We (parents and patients) discuss this often. It seems that some patients get sick frequently and some do not, so we cannot be certain the immune deficiency is CLOVES related.
Q: After reviewing this site, I believe that I (my child) might have CLOVES Syndrome. Who do you recommend that I contact for an official diagnosis?
A: The main hospital that is providing a CLOVES diagnosis, is Boston Children's Hospital. Please contact their Vascular Anomaly department for more information (ph:617-355-5226). Cincinnati Children's will provide information to you as well. Keep in mind, there is a multidisciplinary team that meets monthly to discuss new patients. This team includes physicians from various hospitals across the country.
Q: The doctors are recommending that we amputate some of my child's toes. How do we know that this is the best course of action.
A: Great question! A few parents are going through this currently and it's hard to know what the best option is for your child. The biggest discussion we've had is about increasing the quality of life and mobility for the patient.
Q: I'm not sure what to do, people stare constantly and/or make extremely rude comments about my/my child's "differences".
A:This can be very frustrating, as hard as it is, we feel this is the perfect opportunity to raise awareness about CLOVES Syndrome. Please contact us and we will send you brochures to distribute. We have also created cards that you can print linked below. Please let us know if you have problems and we can send you some as well.
Card 2 - CLOVES Syndrome Foundation Card Page 2
Q: What are our options for the management of symptoms of CLOVES?
A: Currently the only option to reduce lipomatous growths, vascular malformations, bone problems (foot/leg length), or hemangioma’s is through surgery. This is why we created the foundation, we hope we can fund research to ultimately find a cure but if a cure is not feasible, we would love to find alternate options for management of these symptoms.
Q: Do CLOVES patients suffer from migraines?
A: We hear from patients that migraines are common; there has been no study to date offering proof that CLOVES Syndrome is the cause.
Q: I’ve read that Wilms Tumor is prevalent with Overgrowth disorders, have any patients been diagnosed with Wilms (Childhood Kidney Cancer)?
A: Our first case of Wilms (bilateral) was diagnosed in 12/11 and after patients were re-evaluated, we now have 2 patients that have Wilms or early stages of Wilms.