Building Your Healthcare Team
Create Your Healthcare Team and Get Support
It is important that you have the right healthcare providers on your team.
Remember, you are your own best advocate!
Learn what to expect from each type of provider. It will help you know who can best answer your questions and concerns.
A holistic approach to care is essential and that means supporting your mood and connecting with others. You are not alone; connect and support others with familial chylomicronemia syndrome (FCS). Patients benefit from sharing their experience with others who understand and care. Connect today.
Patients with FCS often feel isolated and alone. Misdiagnosed for years, patients may suffer from anxiety and guilt.36 KnowYourTGs.com is designed to empower patients with FCS by providing resources and tools to live a balanced and fulfilling life, despite daily challenges.
My advice to a newly diagnosed patient and their family is not to give up. How you feel today isn’t how you are going to feel for the rest of your life.
– Lynne, Caregiver
Who should be on your healthcare team?
| TYPE | ROLE |
|---|---|
| Primary Care Physician General medicine doctor | Often your first point of contact when you are sick. They will refer you to specialists for addressing specific symptoms |
| Cardiologist Heart and blood vessels doctor | Experts in the diagnosis and treatment of people with diseases of the heart and blood vessels. Some focus on the role of lipid disorders in these diseases. |
| Lipid Specialist Specialist in fat and metabolic disorders | Lipid experts may be able to provide alternative methods of managing high TGs after other more conventional treatments have failed. |
| Gastroenterologist / Pancreatologist Specialist in the thoracic organs | GI doctors specialize in diseases affecting the stomach, intestines, and the pancreas. They are called when patients have complicated issues, like pancreatitis. |
| Registered Dietitian Nutritionist (RDN) Expert on diet and nutrition | This specialist will explain dietary requirements of FCS and create customized nutrition plans to minimize symptoms. |
| Endocrinologist Expert on hormone-secreting glands and organs | Can diagnose and treat conditions related to hormones, such as metabolic and pancreas conditions. |
How Do I Find the Right Healthcare Provider?
Diagnosis is critical to receive the appropriate care. There are specific things that YOU can do to take control of your symptoms and find the right healthcare provider.
- Document symptoms when you feel them. Using a template like the symptom tracker – which you can download – can help you organize your information. Note the date, time, and any other details that you feel may be significant. Having even a short list of symptoms may be helpful for physicians or nurses because it can offer clues to your condition and what lab tests they may need to order, or to which medical specialists they may refer.
- Organize your health records. If you have a history of abdominal pain, pancreatitis, or documented high TGs, be sure that you have this information handy with you at your next doctor’s appointment (we created a lipid tracker template to help document your fasting lipid blood tests). Recent lab test results, discharge papers from hospitalizations or emergency room visits, and having an up-to-date list of currently prescribed medications and supplements should also be included.
- Include the right people on your healthcare team. Now that you’ve documented your symptoms and organized your healthcare records, you can start to find the specialists who may be able to help you. It’s important to establish and maintain a partnership and trust with your healthcare team. There are many different types of healthcare providers that help manage and treat FCS. Your healthcare team may include:
- Primary care provider: a doctor or nurse practitioner specializing in family practice, pediatrics, or internal medicine.
- Cardiologist: a doctor who specializes in the diagnosis and treatment of people with diseases of the heart and blood vessels. Some focus on the role of lipid disorders in these diseases.
- Lipid specialist: a doctor who specializes in managing and preventing cholesterol and other lipid disorders; a clinical lipid specialist may be a nurse or other medical professional who has specialized training in lipid conditions.
- Endocrinologist: a doctor who specializes in the management of diseases of the endocrine system, such as diabetes.
- Gastroenterologist: a doctor who specializes in the abdominal organs/specialist in the pancreas.
- Pancreatologist: a doctor who specializes in managing pancreas disease, including acute, recurrent and chronic pancreatitis.
- Registered dietitian: the critical team member to educate about food choices and nutrition requirements.
You may also see an ophthalmologist (eyes), dermatologist (skin), hepatologist (liver), and a geneticist (genes). Use the checklist below to mark your symptoms and the frequency with which you experience them (i.e., daily, weekly, monthly or note certain hours of the day).
Refer to this resource when speaking to your doctor about symptoms you are experiencing and how frequently they are occurring.
Tracking your symptoms
| what symptoms have you experienced | how often are you experiencing this symptom? | |||
| daily | weekly | MONtHLy | NOTES | |
| Neurological: Headaches, forgetfulness and/or memory loss | ||||
| Fatigue | ||||
| Irregular yellow patches or nodules on skin (eruptive xanthomas) | ||||
| Numbness in feet or legs | ||||
| Abdominal or lower back pain | ||||
| Diagnosed acute pancreatitis | ||||
| Nausea or vomiting | ||||
| Diarrhea | ||||
| Other |
