What Do I Do Now?

Erdheim-Chester Disease

A new diagnosis of Erdheim-Chester Diseasse (ECD) can bring feelings of being overwhelmed, bewildered, scared, angry, sad, disappointed, helpless, and sometimes even feelings of guilt.  It is a time filled with unknowns, change, and new people and situations.  Most patients feel ill-equipped to understand what is happening to them and how to navigate through the illness to recovery.  There are, however, strategies and resources that can help you and your family get through the uncertain times that lie ahead.  One step at a time, you can gather information, create a support system, learn how to cope with stress, and become a strong self-advocate and part of the medical team.  The following tips and suggestions are provided to help guide you through this journey toward recovery. 

Select a topic for more information:

Choosing a Doctor:

Erdheim-Chester Disease is considered a systemic illness; especially in cases where the disease is found in more than one system within the body.  Some patients with ECD may prefer to consult several specialists, depending on the different locations of symptoms.  In this case, it is helpful to have one physician coordinate your care.  An oncologist is usually the most appropriate choice.

Make sure that your doctor is someone you can trust and with whom you can communicate.  Important qualities to look for in a doctor are feeling as though you are heard, being given the opportunity to ask questions, and feeling respected.  If you are unsure about your physician, it is reasonable to schedule another appointment to discuss your concerns. While it is ideal to find a physician experienced and knowledgeable about ECD, it is not always possible to find one who is nearby.  If this is the case, ask the physician if he/she is open to a consultation with a knowledgeable physician and is willing to learn more about the disease. The Histiocytosis Association maintains a listing  of doctors in a Physician Directory who have agreed to perform consultations and/or second opinions or you may call +1 856-589-6606 for contact information of other physicians in your area.

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Sharing Information: 

Talking with your children:  Sharing information can help your child to understand and support you during your illness.  Use words and ideas that are appropriate for your child’s age.

  1. Provide information at a level that is in keeping with his/her ability to understand.
  2. Use your children’s questions as a guide to what he/she wants to know. 
  3. Encourage your child to talk about his/her fears and concerns. 
  4. Remind your child how much you love him/her.

Talking with family and friends:  In the days and weeks following diagnosis, extended family and friends will need to be notified and periodically updated.  However, explaining your situation multiple times can be exhausting and time consuming. The Association offers a section called “Histio Warriors,” which extends an opportunity for patients to create a personal webpage, including photos, contact information, and daily or weekly updates.  These webpages are easy to create and require visitors to register and use a password.  Some patients and families find that the journaling is therapeutic and can provide an easy way to track their history and progress.

Talking with your employer:  You are not legally required to tell a current or future employer about your diagnosis unless you are asking for reasonable accommodations under the American Disabilities Act, or if you are requesting medical leave.  Reasonable accommodations are anything to help you do your job and may include working from home while under treatment, telecommuting, changing your work schedule, or changing your work environment.

If you decide to apply for a leave, under the Family Medical Leave Act (FMLA), you can take up to 12 weeks of unpaid, job-protected, insurance-protected time off each year to care for yourself.  The leave time can be taken all at once or in smaller increments, such as one day/week for medical appointments/treatment.  To qualify for family medical leave under this program, you must work for an employer with 50 or more employees, have worked there for at least one year, and have worked a total of 1250 hours during the 12 months immediately before the date your leave begins.  For more information, you can refer to the US Department of Labor Employment Law Guide.

Another option is to use sick time.  This may or may not run concurrently with leave time.  The human resource counselor at your place of employment may be a good “point person” to discuss further options.

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Getting Organized:

Appointments:  A calendar is a useful tool for remembering appointments and planning for changes to your established schedule.  Calendars that show a week at a time also provide room on each day to record additional brief notes and reminders.

Medical information:  While some basic medical notes can be kept in a calendar, some parents may choose to enter medical information in a laptop or keep a separate notebook.  Be sure to date all entries.  This information will be especially helpful when a new or different caregiver is involved.  Examples that you may want to keep track of include:

  1. Results of various tests.
  2. A listing of allergies.
  3. A listing of medications and dosages. 
  4. Names and phone numbers of your medical care team.  
  5. Health information, such as your hospital number, social security number, and insurance information.
  6. Records of what was discussed during a medical visit/phone conversation and by whom.
  7. Notation of changing symptoms.
Erdheim-Chester Disease patients may find it helpful to collect and organize medical records, starting as soon as possible after diagnosis.  Although the original reports must remain in the physician or hospital file, you are legally entitled to copies of your records. You must submit a signed request for each physician’s office and the hospital.  By keeping all records in one place, you can easily share these with other health care providers that you may see in the future. Follow this link to read more about obtaining your medical records.

Ask for Help:  Anticipate what your needs might be and ask people for help ahead of time. This can reduce some of the stress and give you more time to focus on your medical needs. In addition, it will give the people in your life a productive and useful way to show their support.Some patients may have someone – a family member or friend – who is willing to coordinate offers of help, such as transportation, errands, meals, lawn care, child care (if needed), etc.  It is sometimes helpful to have this person accompany you on medical visits. 

Online assistance: Web-based communities such as Lotsa Helping Hands can be used to organize well-meaning offers of help for meal delivery, transportation, and other needs. 

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If you have health insurance, it’s important that you know what your plan covers.   Read your policy carefully to understand the health and medical services covered. Find out the portion of medical expenses you'll be responsible for paying.  When you have questions or there are things you don’t understand, reach out to other experts available to you, such as the human resources personnel at your place of employment or financial counselors at your medical treatment center.  If filing and tracking claims feels overwhelming, you may want to ask a trusted friend or relative to assist in managing your insurance issues. 

When you call the insurance company, ask to work with one case manager. This may help simplify the process by having one person that knows your needs and can manage your claims. If possible, communicate with the same person on an ongoing basis.  Remember to keep a journal of all encounters. 

If you don’t have health insurance, if coverage is not adequate, or if you are not able to get insurance because of your pre-existing condition, you may qualify for your state’s high-risk insurance pool. You can obtain more information about whether your state participates at the National Association of State Comprehensive Health Insurance Plans website.  If your state does not participate, you may qualify for the federal high-risk insurance pool.  For more information, contact the U.S. Department of Health and Human Services.

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Creating a Support Network: 

On-line:  You can sign up to become a member of the Histiocytosis Association by registering and creating a user name and password.  You will have the opportunity to sign up to receive our newsletters and you will also receive important announcements regarding the latest information on the histiocytic disorders.  Once registered, you may choose to participate in the online discussion group and interact with a large community of ECD families and patients.  The Association maintains a  Facebook page for families and patients with this disease. 

Local support:  The hospital where your child is being treated may have a support group for parents of children with histiocytic disorders, rare diseases in general, or even cancer.  Establishing face-to-face relationships with parents going through similar experiences can be helpful.

The Association sponsors parent and patient Regional meetings, which are held in various locations around the U.S. and hosted by Association staff and volunteers. They are a good opportunity to meet other families and patients, learn from expert physicians, receive and give emotional support, and share practical coping skills while also providing a time to relax, knowing you are with people who understand.

Fundraising events for histiocytic disorders are another way to make connections with families in your region.   A listing of dates and fundraising events is provided on the Upcoming Events page.

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Educate Yourself:

Self-education about ECD is an important part of advocating for yourself.  It will help you to make informed decisions about your  care and play a more active role in your recovery.

The Association website provides education on a number of topics, including disease information, family resources, and past and ongoing research projects.  The Histio Resource Directory provides an extensive listing of global, national, and state-by-state resources for patients and families.  Some of the resources listed are informational, while others are service-based.  A listing of past and current research projects funded by the Association can be found on the Grant Awards page, providing a glimpse into the past trends and current progress of research into the histiocytic disorders.  The Disease Information section of the website features detailed, reliable information on all of the histiocytic disorders.  This can be printed out and shared with medical caregivers, family, and friends if needed.

The Internet is a good source of information about ECD and the treatment options, but the amount of information can be overwhelming, and the information is not always reliable. Some of it, in fact, is inaccurate.  Reliable information is more likely to be found in more current documents that are free of grammatical and spelling errors, appear to be objective, are free of advertisements, and clearly state their sources.

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Advocating for Yourself:

It is essential to take an active role in your health care.  However, many patients have little experience being self-advocates when they first find out that they have a rare disease.  The following is a list of essential tips for becoming a successful advocate:

  1. Learn about ECD and become acquainted with the basic medical terms.  Knowledge is empowerment.
  2. Know the warning signs that mean you may need emergency help.  Know who to call in case of an emergency, and keep phones numbers handy.
  3. Keep a list of healthcare members involved in your medical care, along with contact information.
  4. If possible, take a companion (family member or friend) along on important medical appointments.  The companion can help with remembering details of what was said and may assist by taking notes.
  5. Write down your questions before entering appointments or meetings and write down further questions as you think of them during the meeting.
  6. Don’t be afraid to ask these questions.  This will be an important step in beginning to understand more about the disease. Medical information is often confusing and the language used by medical professionals is not easily understood, especially during stress.  Whenever someone uses a word that you don’t understand, stop the conversation for a minute and ask the person to explain. 
  7. Keep a healthcare notebook with a listing of allergies, medications, symptoms, and communications with healthcare providers.
  8. Find out about resources that the hospital provides, such as a social worker or patient representative.  They can often assist with transportation costs, temporary housing if needed, parking fees, insurance issues, counseling, and other services. 

Be persistent in getting the care you feel that you need.  Don’t hesitate to ask for what you need, and if you do not feel responded to, ask again or ask someone who will respond.

Trust your intuition.  It can be a powerful decision-making tool.  You know yourself better than anyone else.

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Take the time to nurture yourself.  If possible, continue the interests and activities that you enjoyed you and your family ever heard of ECD.  Recognize your needs for support and comfort.  Ask for assistance when you need it.  Pay attention to signs of stress, and consult your physician if you need further help. 

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