Back to School Bucks
With Back to School approaching, the CLOVES Syndrome Community (CSC) is excited to relaunch our Back To School Bucks program for a EIGHTH year. CSC Back to School Bucks is a cash award which has been established to assist individuals impacted by CLOVES with expenses directly related to returning to school or college.
Back to School Bucks expenses may include custom-made or modified apparel including shoes, clothing and school uniforms, which add up quickly this time of year. We cannot process applications for technology, books or homeschool materials. Any applications that reference those materials will be denied.
To qualify for CSC Back to School Bucks, you or your child must be diagnosed with CLOVES Syndrome. We may ask you to provide proof of diagnosis. Additionally, you are required to submit the following information below.
Applications are closed on 8/4/23 at 5pm EST. You will be notified by phone or email by Monday August 16th if you will be receiving CSC Back to School Bucks. Any questions, please email [email protected]
From everyone at CSC, we wish you a successful and healthy school year!
Coping & Support
In this section, you’ll find our two CLOVES publications for kids, blogs, e-magazines, access to our secret FaceBook group, as well as resources for coping with progressive and chronic illness.
Four Leaf Clovers – A book for young children with CLOVES
The story of Four Leaf Clovers draws parallels between children with CLOVES Syndrome and those without, focusing on acceptance, inclusion, and diversity. Four Leaf Clovers strives to not only illustrate acceptance but to shine a light on some simple ways being different can have its benefits. While it was written with CLOVES Syndrome in mind, Four Leaf Clovers is truly a story about embracing differences of all kinds. The age range for this book is approximately 8 and under, but the message is for people of all ages!
Four Leaf Clovers was written by Lauren Beaureguard, in collaboration with Kristen Davis, Executive Director of CLOVES Syndrome Community, and beautifully illustrated by artist Kate Fitzpatrick.
You can make a donation of $25 here – indicate you’d like a copy of Four Leaf Clovers in the memo line – to cover the costs of printing and shipping the book in the US. If you’d like a copy mailed internationally, please email us about shipping rates at [email protected]
Incredible You – A Book for Kids with CLOVES
This book was created by author Lindsay Passodelis, in collaboration with CLOVES Syndrome Community. This book is geared towards kids and teens ages 8 and up, and is suitable for kids with CLOVES, their friends, and family members.
In this book you will meet Kate, a ten year old with CLOVES Syndrome. You will read about Kate’s medical experiences, how she talks about CLOVES, her friendships, how she copes and how she loves to have fun.
There are two ways to access this resource
- Suggested donation for this book is $15, to cover our costs to print and ship. If you put a check in the mail, enclose a note with how many copies of the book you would like.
Donation options here If you donate online, please add a note in the memo line that you are donating towards Incredible You. If you’d like a copy and cannot afford the $15 suggested donation, please contact us at [email protected], as we may be able to offer you a book for reduced cost.
- Peace, Love, Heal – A blog about living with CLOVES
- Bandaides and Blackboards – This is a site dedicated to kids growing up with medical challenges
- Sew Able Dolls – Unique dolls just like you! – a company that makes dolls with special needs, wheelchairs and adaptive equipment
- Paralyzed pets having fun – A recent CBS article on pets with special needs
- Complex Child E-Magazine – Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities
- Disarming Disability – We live with a disability, but that’s only part of our story.
To join our secret Facebook Group for people with CLOVES and/or their primary caregiver(s), please friend our welcome account.
Some people with CLOVES/PROS receive Special Education services in the public school setting. Learn about Special Education laws, your rights, resources to have on hand and some pro tips about how to keep all of your educational paperwork organized.
Organizing your records:
Does your child have an IEP? Get a sturdy 2-3 inch binder. This will be traveling with you for many years to all your meetings.
Your binder sections:
- IEP/504 (include all 504 plans or IEPs and amendments)
- IEP progress notes (YOU MUST RECEIVE THESE EVERYTIME A “REGULAR ED” REPORT CARD COMES HOME – even if it takes another two weeks or so.) If you receive three report cards, you receive 3 progress notes with details about how your child has progressed on IEP goals.); IEP written notices, also called “prior written notice” even when written after a meeting (These are the school’s meetings notes. Include your OWN meeting notes in this section. Legally, you are allowed to bring anyone to an IEP)
- Special education evaluations and reports (include any private evals or medical reports, if that applies)
- Standardized Assessments (include any state assessments-in MAINE: NWEA, NECAP, STAR, Acuplacer-high school-PSAT, SAT; School Report Cards (include high school transcripts)
- Home/school communication (either log time, date, content of calls or copies of emails pertaining to services, grades, IEP)
- Timeline: each year document concerns about school work and staff interaction/student placement. You can’t predict when you needs this, so do it proactively. It can be helpful in Annual IEP or 504 plan review when you are asked to document parent concerns IN THE IEP or verbally at a 504 review meeting.
- Also print off some info about CLOVES Syndrome from this website.
IEP EXPLAINED (the form):
(Pennsylvania Secondary transition information) http://www.pattan.net/category/Educational+Initiatives/Secondary+Transition
Executive Functioning information:
Laws to keep in mind: ADA (504), IDEA (IEP), FAPE (Free Appropriate Public Education)
And resources to guide you at meeting time:
- Evaluations http://adayinourshoes.com/iep-evaluations/
- Parent Input http://adayinourshoes.com/creating-vision-statement-childs-iep/
- Documentation http://adayinourshoes.com/iep-prior-written-notice-pwn/
- Legal help http://adayinourshoes.com/wrightslaw-iep-special-education/
Family Assistance Program
The CLOVES Syndrome Community Family Assistance Program provides financial relief to families impacted by CLOVES Syndrome. We are a community that understands CLOVES Syndrome and the associated financial burdens. Our mission with the CSC Family Assistance program is to alleviate some of the costs associated with medical care, medical-related travel, and other CLOVES-related needs.
To qualify you for this assistance program, you or your child must be:
- Diagnosed with CLOVES Syndrome
Financial assistance must be associated with the treatment, travel, medically needed equipment or expenses unique to an individual living with CLOVES Syndrome.
Some examples of qualifying requests are below, but are not limited to:
- Costs associated with travel and lodging for medical treatment
- Cost of medical equipment associated with the treatment of CLOVES Syndrome
- Medical expenses from co-pays/deductibles
- Costs associated with genetic testing
- CLOVES Conference related costs
Additionally, CSC, at the discretion of its Board of Directors, may grant awards under the Family Assistance Program related to extenuating expenses that are unique to an individual living with CLOVES Syndrome.
Applications will be reviewed by our Board of Directors at the next scheduled meeting. If you express an URGENT need, the board will aim to review within one week of receipt of a complete application.
Info on lymphedema therapy:
What is lymphedema therapy? Lymphedema therapy is a form of “decongestive therapy,” which aims to alleviate chronic swelling from lymphedema. Trained therapists stimulate the lymphatic drainage system through “manual lymphatic drainage” massage techniques. Following MLD, therapists often appy compression bandaging to continue stimulating lymphatic drainage.
How does lymphedema therapy improve a CLOVES patient’s symptoms? Lymphedema therapy stimulates and promotes improved lymphatic drainage, which means that MLD therapy should help decrease a patient’s swelling and the pain associated with swelling. For a patient that is experiencing function or motion loss due to swelling or swelling pain, lymphedema therapy can also help a patient maintain or even restore function and movement if swelling and pain improve.
Is lymphedema related to health complications aside from swelling and pain? Yes, many lymphedema patients endure the vicious cycle of lymphedema and cellulitis perpetuating one another. For patients who battle recurrent cellulitis, lymphedema therapy helps treat the damaged lymphatic system from cellulitis. Lymphedema therapy may also help reduce risk or frequency of cellulitis infections by promoting proper lymphatic drainage and alleviating fluid congestion. For my information on the association between lymphedema and cellulitis, as well as the need to treat both interrelated conditions, see this article from he Journal of Lymphoedema: https://www.woundsinternational.com/uploads/resources/content_11173.pdf.
How do I find a lymphedema therapist? Some physical therapists or occupational therapists are certified in lymphedema treatment; however, it is crucial to see a therapist that is qualified as a Certified Lymphedema Therapist. First and foremost, talk with CLOVES patient’s doctors/team about lymphedema therapy and referring the patient to a CLT. Second, you can consult this website to see if there are CLTS near you; however, this site only shows lymphedema therapists that have been certified by LANA (Lymphology Association of North America). There may be qualified and certified therapists near you that simply may not be LANA certified. See: https://www.clt-lana.org/therapists?radius=25&zip=75201.
What is lymphedema and how is related to CLOVES? CLOVES patients tend to have primary lymphedema, meaning their genetic abnormality has caused lymphatic malformations. These lymphatic malformations impact the flow of lymphatic fluid through the impaired lymphatic vessles and nodes. Lymphedema develops due the congestion of lymphatic fluid. Because of the build up of lymphatic fluid, CLOVES patients are at a much higher risk for cellulitis infections.
Important links for further info:
- An article on cellulitis and lymphedema: https://www.woundsinternational.com/uploads/resources/content_11173.pdf
- An article on Manual Lymphatic Drainage: https://www.physio-pedia.com/Manual_Lymphatic_Drainage
- An article on finding a certified lymphedema therapy: https://lymphedivas.com/blog/how-to-find-a-qualified-lymphedema-therapist/
- An academic article on lymphatic anomalies: https://www.jci.org/articles/view/71614
- An academic article on lymphedema and capillary formation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4778889/
- An article on compression and cellulitis in children: https://vascern.eu/new-dos-and-donts-factsheet-on-childrens-compression-and-cellulitis-flowchart-from-the-ppl-wg-now-available/
Info on lymphatic compression bandaging and garments:
In addition to Manual Lymphatic Drainage therapy, compression garments can help alleviate swelling and pain. Talk to a certified lymphatic therapist about the options, including what your health insurance may and may not help cover. When you’re discussing placing an order for compression garments, make sure to take your deductible and out-of-pocket max into account. You may be able to spend less on compression garments if you have already met your deductible, out-of-pocket maximum, or are toward the end of your insurance cycle. Your lymphatic therapist will be able to look at your health insurance benefits and help decide when and what to order.
When you are conversing with a doctor or therapist about compression garments, keep in mind that garments are a long-term investment. With that said, you do not want to place an order for garments when swelling is at its worst. You will likely want to try to decrease swelling as much as possible through MLD therapy before ordering garments so that your garments fit properly. If you order garments when swelling is at its worst, such as immediately following cellulitis, then your garments will not fit once the swelling improves. Talk with your therapist about the right timing to order garments, seeing as that garments are meant to be long-term.
If compression garments are not an option due to either insurance/payments barriers or the size/shape of the garments needed, then talk with your lymphatic therapist about other forms of compression, such as: 1. short stretch bandaging, which often looks similar to Ace bandages but actually encourage lymphatic drainage because of its short stretch fabric. These bandages look like Ace bandages, but Ace bandages are a long stretch fabric, which means they do not promote lymphatic drainage and are therefore discouraged. One short stretch option in 3M Coban, which may be used either by itself or with padding to provide needed pressure. Medium stretch bandages are sometimes used for lymphedema, though these bandages are typically used above wound dressings or with foam padding beneath. 2. elastic or non-elastic stockinettes, which may be additionally be used under certain types of compression garments. 3. kinesio tape, which is used to increase lymphatic fluid flow. Many lymphedema therapists are trained in proper application of kinesio tape and can educate patients and caregivers on applying tape if Kinesio tape is an option for the patient.
Lymphedema compression garments come in a variety of options, including ready-to-wear garments and custom garments. Every CLOVES patient is different; therefore, the type of garments that would be most helpful for each patient depends on the needs of the patient. Explore the options and talk with a certified therapist about what would be most helpful for the individual CLOVES patient. Because CLOVES patients often have overgrowth or mishappen extremities and digits, ready-to-wear garments may not fit. Therefore, if custom garments are not an option due to financial barriers, discuss the plausibility of adapting or adjusting ready-to-wear garments with your certified therapist. For example, one CLOVES patient with finger syndactyly found that an adjusted (cut and sown) foot garment fit better than a hand garment. Additionally, because of overgrowth, CLOVES patients may find that adjustable velcro garments are preferred over ready-to-wear sleeves. Again, talk with your therapist and compression garment represenatives about creative options and solutions.
Discuss garment options with a therapist that can look at your insurance benefits and help decide which garments will be best. Though you can purchase garments from some retailers without a prescription, a doctor will usually have to write a prescription for compression garments from lymphedema speciality retailers, which is why it is crucial to work with a therapist who will assist you with this process. If you want to see the types of garment options that are available, visit these links:
Additional compression options to ask about:
Depending upon your health insurance and what your insurance will cover or assist you in paying, you may consider asking about purchasing a pump that will perform MLD therapy for the CLOVES patients. These pumps go by various names, such as pneumatic compression pump, lymphedema pump, or simpy edema pump. A doctor or therapist may suggest utilizing a pump at home either in the place of or in addition to MLD therapy by a therapist.
If the patient’s health insurance will only cover a certain number of treatment visits with a certified therapist, then a pump may be a good option for lymphedema therapy at home once the patients has reached the maximum number of approved visits. The patient will be able to continue lymphatic therapy at home as the pump moves lymphatic fluid and stimulates lymphatic drainage. Lymphatic pumps use air pressure to gently massage the part of the body with lymphedema and stimulate fluid movements.
In addition to the pump itself, the patient will need attachments or garments that fit over the parts of the body that are in need of lymphatic drainage therapy. Companies such as Tactile Medical have attachments/garments for the trunk, head/neck, lower extremities, and upper extremities. Once a patient has the pump, attachments can be purchased and used as needed. The pump supports all of the attachments. With that said, there are several companies that have lymphatic drainage pumps, so talk with a certified therapist about which company, pump, and attachments are right for the patient. Additionally, for maximum lymphatic drainage support, the therapist may suggest using multiple attachments in order to promote proper fluid movement through the entire body.
A term you may hear a doctor or therapist say is “complete decongestive therapy” (CDT). This term refers to an intense program of two phases: intensive phase and maintence phase. In these phases, a doctor or therapist will combine bandaging, compression garments, MLD therapy, exercise, and good hygiene/self-care, such as skin care and learning to perform MLD therapy at home. CDT may not be recommended for patients that have acute infections, blood clots, paralysis, high blood pressure, and/or other conditions. For more information on CDT, you can visit this link: https://www.physio-pedia.com/Complete_Decongestive_Therapy_(CDT)
Talk with the patient’s doctors or therapist about forms of exercise that can promote lymphatic drainage by strengthening the lymphatic system. Many of these exercises involves stretching or contracting and relaxing the muscles. An exercise plan may also include aerobic exercises, such as swimming, cycling, walking, and possibly yoga. Again, talk with a certified therapist and develop an individualized plan that works well for the patient.
Thank you to Family Advisory Council member Lindsey Johnson Edwards for her work on this resource.
Medicaid Waivers by State
This list contains all of the Medicaid waivers and other programs, regardless of type, available for children in the United States, ordered alphabetically by state. The list can display up to 100 programs and is sortable by state, program type, ages served, level of care, population served, and income waiver. Click on the state name to access detailed information about that state and its programs.
- Program Type information can be found in our About section.
- Level of Care denotes what type of institution the child would require if not in the program, and can be a Hospital, Nursing Facility, or Intermediate Care Facility.
- Income Waiver specifies whether or not the parents’ income is waived when applying to the program. A question mark means we are unsure.
Below is a partial list of multidisciplinary Vascular Anomalies Centers that may provide treatment, monitoring, and oversight for CLOVES/PROS. Providers on this list should not be construed as recommendations by CLOVES Syndrome Community.
- Arkansas Children’s Hospital Vascular Anomalies Center – Little Rock, AR
- Boston Children’s Hospital Vascular Anomalies Center – Boston, MA
- Children’s Health Vascular Anomalies – Dallas, TX
- Children’s Healthcare of Atlanta Vascular Anomaly Program – Atlanta, GA
- Children’s Hospital Colorado VAC Program – Denver, CO
- Children’s Hospital of Los Angeles – Los Angeles, CA
- Children’s Hospital of Philadelphia – Philadelphia, PA
- Children’s Hospital of Wisconsin – Milwaukee, WI
- Children’s National Vascular Anomalies Clinic – Washington, DC
- Cincinnati Children’s Hospital Hemangioma and Vascular Malformation Center – Cincinnati, OH
- Columbia Vascular Anomalies Group – New York, NY
- Doernbecher Children’s Hospital/OSHU Hemangioma and Vascular Birthmarks Clinic – Portland, OR
- Helen DeVos Children’s Hospital at Spectrum Health – Grand Rapids, MI
- Hemangioma and Vascular Malformations Program – NYU Langone – NYC, NY
- Johns Hopkins Vascular Anomalies Center – Baltimore, MD
- Johns Hopkins All Children’s Hospital – St. Petersburg, FL
- Kentucky Children’s Hospital Vascular Malformation Clinic – Lexington, KY
- Lucile Packard Children’s Hospital-Stanford – Vascular Anomalies Center – Palo Alto, CA
- Nemours Vascular Anomalies Center – Orlando, FL
- Seattle Children’s Vascular Anomalies Clinic – Seattle, WA
- Texas Children’s Hospital Vascular Anomalies Center – Houston, TX
- University of California San Francisco Birthmarks and Vascular Anomalies Center – San Francisco, CA
- University of North Carolina Vascular Anomalies Clinic – Chapel Hill, NC
- Vanderbilt Children’s Hospital/Monroe Carell Jr. – Nashville, TN
- Multidisciplinary Birthmarks and Vascular Anomalies Clinic at University of Wisconsin Hospitals & Clinics – Madison, WI
- Washington University/St. Louis Children’s Hospital – St. Louis, MO
- Sick Kids Vascular Anomalies Clinic – Toronto, ON
VASCERN Provider Listing
- St. Luc Centre for Vascular Anomalies – Brussels, Belgium
- Necker Enfants Maladies/Syndromes of Hypergrowth – Paris, France
- Great Ormond Street Hospital – London
Email us at [email protected] to add a provider suggestion
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
- Medical literacy – Learn how to evaluate the websites and other resources you find so you can trust the information and make informed decisions
- Learn as much as you can about CLOVES. Here are a few places you can get started:
- CSC FAQs page
- Boston Children’s Hospital
- Cincinnati Children’s Hospital
- Research Simplified – Quick summary of CLOVES written by researchers
- Clinical Practice Guidelines for CLOVES – Developed by Boston Children’s
- CLOVES Syndrome Community Publications Database – CSC maintains a database of peer-reviewed published papers relevant to CLOVES and PROS
- 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. https://www.facebook.com/WelcometoCLOVESCommunity
- 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.
Below please list of private and commercial providers who may be able to get you/your child to out of state medical treatment.
Angel Flight, now called “Air Charity Network”: www.aircharitynetwork.org
Family’s home airport must be less than 1000 miles from Boston and child/adult must be able to fly on small aircrafts.
Miracle Flights: www.miracleflights.org . This organization uses volunteer pilots, corporate aircrafts AND commercial flights.
The Northwest Airlines KidCares medical travel program provides air travel to children age 18 and younger who are unable to receive treatment in their home area. The KidCares program is fueled by generous mileage donations of Northwest’s WorldPerks members, which are then matched by Northwest. Availability of the program is based on that donated WorldPerks mileage, and consideration of each request is based on the following guidelines.
Mercy Medical Airlift: www.mercymedical.org They are associated with Angel Flight. Commercial flights.
Operation Lift Off: http://www.operationliftoff.com/Mission.html. Provide air transportation to specialized care and treatment centers.
Angel Flight East – is a nonprofit organization that facilitates free air transportation to children and adults in need of medical treatment far from home. Volunteer pilots use their own aircraft and pay for all costs of the flight. AFE covers a 14 state territory from Virginia to Ohio to Maine and for destinations beyond that, we link up with other volunteer pilot organizations.
List of multiple options: http://mercymedical.org/helpful-links/
In addition, if your child has Medicaid, some or all of their medical travel/expenses may be covered. Check with you/your child’s Medicaid worker.
Finding well fitting and appropriate footwear can be a huge challenge for people living with CLOVES. Our shoe resources page includes shoe providers to purchase two sizes of shoes, shoe modifications, adaptive/non-traditional footwear and 3D printed shoes.
How to create your own shoes – Shoe Capstone Project/University of Akron – Ohio
Modified and Custom Shoes for purchase:
- Althea’s Footwear Solutions – Althea can work with people all of over the USA – [email protected]
- Code Footwear – Oliver and team can work with people all over the USA – Oliver Brossmann [email protected]
- SoftStar Shoes – Custom moccasins. Ask for Elf Katie about custom orders
- Video about Croc Modification – Created by parents of a child with CLOVES
- Hersey Custom Shoe – We make custom made shoes one at a time
- DIY Barefoot Footware
- One Family’s journey with 3D Printed Shoes
- Orthopaedic Bespoke Shoes
- DT Footwear
- Russell Moccasin
Companies that provide adaptive/non traditional shoes and extra wide shoes:
- Zappos Adaptive – Adaptive shoes and more
- Zappos Single Shoes – Single and different size shoes
- Big and Wide Shoes – A company that provides big and wide shoe brands
- Grow Five – The Shoe that grows expands five sizes and lasts for years
- Billy Footwear – Fashion and Function forward shoes for everyone
- Hitchcock Shoes – Extra Wide Shoes (2E-8E)
- Silvert’s Adaptive Shoes and Clothing
- The Wide Shoes
- Kepner Scott Shoe Company
- World of Ugg – Adaptive shoes
- Bedrock Sandals
Companies that sell two different sizes of shoes:
Shoe brands that come in Extra Wide and beyond:
- New Balance
Email us at [email protected] to add a shoe resource suggestion that has worked well for you.