Medical Self Advocacy

CLOVES is a very complex and rare disease and often medical professionals are unsure about proper treatment. This can lead to poor or unsafe treatment options, or overly aggressive treatment from ill-informed medical staff. It’s important to be well informed about CLOVES so you know how to go about making safe, informed decisions regarding treatment and day to day maintenance, as well as to help you build an informed medical team around you to assist in your care.

Learning about CLOVES 

  • Additional resources
    • CSC Facebook group – The CLOVES facebook group is an excellent way to ask questions of fellow CLOVES patients and families, and to learn about resources and treatment tips, as well as to hear about current CLOVES and PIK3CA research. To ensure the privacy and safety of the members, the CLOVES Facebook page is private and cannot be accessed by non-members. To join, please friend the Welcome to CLOVES Community Facebook account and you will be added to the private group.
    • CSC Newsletter – Join our newsletter to be kept up to date on research developments and new treatment options and other valuable resources. Submit your email address to the form available at the bottom of this page.
    • National Library of Medicine – Pubmed is a database of peer-reviewed and published medical journals and can be a great way to keep up with the most current research. Many journals are behind paywalls, but the article summary can usually be seen for free and some full articles can be accessed for free. You can also email the researchers or someone you know in the field to ask if you can have a copy for personal use. These journals do require an advanced level of scientific literacy, but don’t hesitate to ask for clarification on the CLOVES facebook page or by emailing us here at the CLOVES Syndrome Community.
    • Clinical Trials – CLOVES is a relatively young rare disease that is only now beginning to have treatment options. You can keep up to date on new CLOVES and PIK3CA treatments coming down the pipeline here.

Teaching your medical team about CLOVES

  • Although we live with CLOVES every day, either through our own experience or that of our loved ones, the reality is that most physicians have not heard of CLOVES or any of the related PIK3CA diseases. If they have heard about it, it’s likely in the context of a brief one-paragraph blurb in their college textbook, or some sort of simple wiki search. You may need to help inform them about the disease so they can use their medical expertise to effectively help you.
  • If you’re a parent, try to involve your child in some of the process of learning about CLOVES and teaching the care team about CLOVES. It can help them feel more confident and comfortable advocating for themselves and help prepare them for being able to manage their medical needs if you’re not able to. 
    • Ask your child periodically about CLOVES to gauge their understanding and answer any questions they might have with accurate, age-appropriate information. Checking in can also inform you about things they may be dealing with that you weren’t aware of.
    • During appointments, encourage your child to answer some of the care team questions and involve them in decisions about their own care to build confidence and to give them a sense of control.
  • Sometimes you can face some resistance from your care team when trying to educate them about CLOVES, but that can also be a good way to determine if they’re a good fit. If they seem unwilling or unable to learn about CLOVES, you may want to consider finding someone you feel safer with. A few ways to help educate your medical team:
    • Periodically get a copy of your medical records from your facility. Having a copy of this for your own personal use and distribution can be helpful so you can understand your condition and treatment, and so you have it readily available if a new physician requests it.
    • If you find a care team member that you particularly like and trust, ask them to write a summary letter for you. They should know how to do this, but it should at least include a patient history and your current treatments. Having this handy can be enormously helpful for getting new care team members up to speed, and can also circumvent some of the resistance physicians can have when it comes to listening to their patients.
    • Clinical Practice Guidelines for CLOVES – This document developed by Boston Children’s in 2014 lays out a good medical summary of CLOVES and provides the current treatment options. It’s catered directly to physicians and can be very helpful for educating them about CLOVES.
    • National Library of Medicine – Peer reviewed articles can be helpful to educate your care team about CLOVES or to convince them that a treatment option that you are interested in is tested and safe. Unfortunately, many doctors will trust published documents more than your word because they deal with a lot of patients who come to them with poor information gathered from the internet 

Know your rights as a patient/caregiver

  • It is your (or your child’s) body, and it is ALWAYS your right to choose what treatments you undergo. Informed consent is a process medical providers must go through in order to provide treatment. This means they must get your express permission to provide treatment, either verbally or on paper. This also means that you always have the right to refuse or delay treatment. You have to be the one to feel safe and believe that it’s the best option, not your physician. Their professional opinion matters, but ultimately you need to make the best decision for yourself or your loved one
  • Many medical facilities have more than one option for generalists and specialists. Take advantage of any resource you can find to research your options for your medical team such as looking at their public profiles, educational background, board certifications, awards, medical license history, and published articles to determine whether you want them on your team. You can also see if they have a profile on social media. Referrals from other CLOVES patients and families are invaluable so ask other families you know or inquire on the Facebook page. Ultimately it will always be a gamble, but you might as well take advantage of what you can when selecting a physician. Not every facility will let you switch if you find that your current provider is lacking, but it’s worth asking. Whenever possible, don’t stay with a medical provider that makes you or your loved one feel uncomfortable or unsafe.
  • If you are hospitalized, know that you always have the right to request a different doctor, nurse, or other provider, when available.
  • When you’re hospitalized, you can request that the hospital contact your primary care physician to keep your care team informed and to assist with care planning and decisions, if you so choose
  • Ask the hospital or your care team if there are any resources that may be helpful in your specific case. For instance, resources may be available to help assist your child get through a difficult procedure, or you may have concerns about mobility or food scarcity after a long hospital stay. You may not know a resource exists that can help with something you’re struggling with until you ask. It can be helpful to have a social worker on your care team for this.
  • If you have a particularly bad experience with a care team member, don’t be afraid to submit formal complaints, either to the hospital, to an ombudsman, the Patient Relations department of the hospital or directly to the state. This can be exhausting and intimidating, but it’s your health that is being affected. Articulating complaints, particularly the ones dealing with patient safety, can be helpful for the hospital to learn where they are deficient which will ultimately improve your care.
  • If you know that you’re likely to be hospitalized, consider meeting with your care team in advance to prepare a care plan so that you can focus on getting healthy and feel confident that the team around you will know how to take care of you when things become emergent.
  • Designate a medical durable power of attorney (DPOA) or a health care proxy to someone you trust. This means that this person can make medical decisions on your behalf if you are incapacitated or unable to make decisions for yourself. Discuss your wishes with them ahead of time, and try to pick someone that knows you well. You can submit their name to your hospital or provider so the info is entered into your chart for when it’s needed. Ask your physician how to go about doing this as the rules for this vary by state and by facility.
  • Consider creating an advance directive. This is an official document that you can submit to your hospital that writes out in clear, legal writing what you wish your treatment to look like if you’re unable to answer those questions for yourself. Often these documents are catered towards end-of-life planning but don’t be alarmed by that. It can be used by anybody who wants to have a medical plan in place and it can be helpful for patients with difficult diseases like CLOVES. You often can use it to legally designate your DPOA (see previous bullet point)

Prepare for your appointments

  • Keep all your information organized in a CLOVES binder that includes a patient history, current medication lists, important phone numbers, and a one-sheet with all the most important, most often needed information so you can easily discuss treatment and symptoms. You can also keep a copy of your advance directive and the Clinical Practice Guidelines to give to your doctor to learn about CLOVES. You’ll get the best information in return if you are able to accurately describe your question or issues to your medical team.
  • Keep track of any data that may be helpful to show your medical team. This can vary based on how CLOVES has manifested in your case, but this can include limb volume measurements, frequency of bleeding, neurological symptoms, drug reactions, daily pain scores, new symptoms, mood changes, diet, or anything else that may be helpful for your medical team. Baseline and current photos of the affected areas can also be very helpful for your team to assess changes over time.
  • Come to your appointment with a list of questions that you would like to have addressed during your appointment. Be as specific as you can with your questions. Remember — no question is stupid! You need to know and understand what the plan is for your treatment.
  • Try not to be shy about explaining your medical concerns to your team. They’re medical professionals so not many things you say or show them about your body will embarrass them, but if they don’t know the important details, they can’t help you. Being confident and assertive can help your medical team trust you and will help ensure you receive appropriate and safe care.
  • If you’re meeting a new primary care doctor for the first time, consider asking for a longer appointment. Explain to them that you have a rare, complex condition, and a standard appointment may not be long enough for your physician to learn very much about you.
  • Take notes during or right after your appointment to make sure that your questions were answered and to write down questions that come up during your appointment. Some people use a Notes app on their phone, others prefer pen and paper.
  • If possible, have someone with you to listen and take notes during your appointment so you can focus on the appointment itself.
  • Some physicians will allow you to record the audio of your appointment so you can review it later. Recording laws vary by state and country, so always ask your physician for permission before recording them!
  • Don’t hesitate to ask for clarification as many times as you need to before you make any decisions about your care. Don’t make any decisions that you feel pressured into by your medical provider. Often they’re evaluating your condition based on what they’ve seen and learned previously, and very few physicians have encountered CLOVES before you and even fewer know how to treat it. They also often use medical or scientific jargon that can be difficult to understand. It’s ok if your medical provider has to answer the same questions over and over — you need to feel comfortable that the treatments are appropriate and safe, not them. The CLOVES facebook page or the CSC website can be a valuable resource for any questions.
  • Some medical offices have online portals where you can send questions to your doctor instead of setting up a visit. Some doctors are willing to provide you with their internal email address if you ask for it and tell them how it might be helpful in your situation. Reserve this option for emergent questions and use traditional methods for other questions.
  • Ask your team questions about anything you’ve read regarding emerging treatments, medical advancements, and other information you may have found. Generally providers are not up to date on the latest medical journals and studies on CLOVES but can help you to interpret the results or break through the jargon. It can also be a way to keep your provider informed of the current trends and treatment options, which change frequently with rare diseases as our knowledge grows.

Above all, practice good self care of yourself and your loved ones. CLOVES is a lifelong disease and a constant battle so taking time for yourself and loved ones away from CLOVES is just as important for effective medical advocacy.

Additional questions? Email us at [email protected]

Thank you to Family Advisory Council member Kai Rehder for his work on this resource.