Unsung Heroes: Caregivers in the Hypoparathyroidism Journey
(BPT) - Caring for a loved one with a chronic condition is a daily commitment that can impact every aspect of life. For family caregivers, the role often extends far beyond providing physical support. It can also mean being a source of emotional comfort, an advocate during their loved one's healthcare journey, and a steady presence through hard times.
This is especially true for caregivers supporting individuals living with hypoparathyroidism, also known as hypopara, a rare endocrine disease caused by missing or low levels of parathyroid hormone that can lead to debilitating physical and mental symptoms that significantly impact quality of life.
Every November, Caregiver Action Network spearheads National Family Caregivers Month to recognize the millions of caregivers who provide invaluable care and assistance. Even in the face of challenges, caregivers are always there. Their dedication should never go unnoticed, especially those navigating the unique realities of rare diseases like hypopara.
Understanding Hypopara
Parathyroid hormone (PTH) plays a critical role in regulating calcium and phosphorus levels in the body. Without it, calcium levels can drop to dangerously low levels, triggering a range of symptoms and impacting multiple body systems. Hypopara occurs when the parathyroid glands, tiny glands located in the neck, do not produce sufficient PTH for the body.
People with hypopara may experience muscle cramps or spasms, tingling or numbness in the fingers, toes, or face, persistent fatigue, difficulty concentrating, or even seizures. For many, these symptoms can be constant, unpredictable, and can disrupt not only their lives but also the lives of those around them.
Living with chronic hypopara also means a lifetime of treatment. For years, the standard approach has relied on calcium and active vitamin D. While this regimen can help manage some symptoms, it can also lead to a high pill burden. For some patients, this can mean taking over 50 pills a day - which demands constant attention and support from caregivers.
The Hypopara Journey and the Role of Caregivers
While hypopara can result from genetic or autoimmune causes, it most often results after neck surgery, when the parathyroid glands may be unintentionally damaged or removed. Unfortunately, some patients are not informed that hypopara can be a potential complication of their surgery.
This lack of awareness can lead to delays in diagnosis and treatment, making awareness of the disease within the medical community equally important. Symptoms of hypopara can appear subtly and be easily mistaken for other conditions, which is why patients and caregivers should know what to look for.
Stephen, a physician and caregiver to his wife Joanna, who was diagnosed with hypopara after a thyroidectomy, highlights these specific challenges: "The hardest part for me is knowing how quickly she can go from looking perfectly fine to being in critical condition. I'm a doctor, and I was really not prepared for how much hypopara would impact Joanna."
Stephen also points out how essential it is to have a direct line of communication with healthcare professionals: "The lack of understanding around the disease, even within the medical community, only adds to the challenge. You really have to advocate for yourself and your loved ones. Every time Joanna ended up in the emergency room, it was an immense burden and took a heavy toll on our family."
Supporting someone with hypopara often means monitoring their symptoms closely, ensuring medications are taken on schedule, and being ready to act quickly if calcium levels drop or new symptoms appear. For caregivers, these responsibilities can be both stressful and demanding.
Tim, who has helped care for this wife Lynette through her hypopara journey, reflected on his role: "Watching my wife struggle with hypopara is difficult. I knew my part in this was to support her in every way I could: from recognizing symptoms and keeping track of her current medications in case of an emergency, to attending doctor's appointments so I knew what was happening, driving her to other states in search of help and answers, and sometimes just bringing her ice cream when she wasn't feeling well."
Caregivers help their loved ones feel supported every step of the way, making sure those patients never feel like they're facing their illness alone.
Management of Hypopara
For years, the standard of care for hypopara has been daily doses of calcium and active vitamin D. However, there is another therapeutic option for people diagnosed with hypopara and their physicians to consider. YORVIPATH® is the first and only FDA-approved treatment for low parathyroid hormone in adults. It is administered as a once-daily injection using a convenient, prefilled, ready-to-use pen. The medication is designed to provide continuous exposure to active PTH over a 24-hour dosing period.
YORVIPATH is intended to maintain serum calcium levels within the normal range without the need for active vitamin D or therapeutic doses of calcium. However, patients can continue taking calcium as needed to meet their daily dietary requirements.
It is not known if YORVIPATH is safe in patients who were recently diagnosed with hypoparathyroidism after surgery, patients who start with low levels of calcium in the blood, and children. People should not use YORVIPATH if they are allergic to any of its ingredients. Some side effects include high and low levels of calcium in the blood, possible bone cancer, and dizziness when standing. For more detailed safety information, please refer to the end of this article.
Support for Caregivers
Family caregivers are the backbone of patient care. They deserve not only acknowledgement, but support and opportunities to share their experiences to help others that are going through similar journeys. By understanding what living with hypopara really means, we can create a stronger community for both patients and the families who care for them.
IMPORTANT SAFETY INFORMATION AND USE
What is the most important information I should know about YORVIPATH®?
YORVIPATH may cause serious side effects, including:
- High levels of calcium in the blood (hypercalcemia).YORVIPATH can cause some people to have higher blood calcium levels than normal. Your healthcare provider should check your blood calcium before you start and during your treatment with YORVIPATH. Tell your healthcare provider right away if you have nausea, vomiting, dizziness, feeling thirsty, confusion, muscle weakness, or irregular heartbeat. Hypercalcemia is more likely to occur within the first 3 months of starting YORVIPATH, but it may occur at any time.
- Low levels of calcium in the blood (hypocalcemia).People who stop using, miss, or change a dose of YORVIPATH may have an increased risk of low blood calcium levels, but hypocalcemia may occur at any time. Tell your healthcare provider right away if you have tingling in your fingertips, toes, lips or tongue, muscle spasms or cramps, oral numbness, depression, have problems thinking or remembering, abnormal heart rhythms, or seizures.
- Possible bone cancer (osteosarcoma).Tell your healthcare provider right away if you have pain in any areas of your body that does not go away or any new or unusual lumps or swelling under your skin that is tender to touch. These are some of the signs and symptoms of osteosarcoma and your healthcare provider may need to do further tests.
Who should not take YORVIPATH?
Do not use YORVIPATH if you are allergic to palopegteriparatide or any of the other ingredients in YORVIPATH.
What should I tell my healthcare provider before taking YORVIPATH?
Before using YORVIPATH, tell your healthcare provider about all of your medical conditions, including if you:
- are at higher risk of a type of bone cancer called osteosarcoma. This is especially important:
- if you have a bone disease that increases your risk of developing osteosarcoma (including if you have Paget's disease).
- if a blood test shows that you have unexplained increases in bone alkaline phosphatase.
- if you have cancer of the bones or other cancer that has spread to your bones.
- if you are having or have had radiation therapy to the skeleton.
- if you are affected with a condition that runs in your family that can increase your chance of getting cancer in your bones.
- take medicines that contain digoxin, are used to treat osteoporosis, or can affect calcium levels in your blood.
- are pregnant or plan to become pregnant. It is not known if YORVIPATH will harm your unborn baby. Tell your healthcare provider if you become pregnant during treatment with YORVIPATH.
- are breastfeeding or plan to breastfeed. It is not known if YORVIPATH passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby during treatment with YORVIPATH.
Tell your healthcare provider about all the medicines you take,including prescription and over-the-counter medicines, vitamins, and herbal supplements. YORVIPATH and other medicines may affect each other causing side effects.
What are the possible side effects of YORVIPATH?
YORVIPATH may cause serious side effects:
- Allergic (hypersensitivity) reaction, including anaphylaxis.Stop taking YORVIPATH and tell your healthcare provider or get emergency medical help right away if you have swelling of your face, lips, mouth, or tongue, breathing problems, fainting, dizziness, feeling lightheaded (low blood pressure), fast heartbeat, itching, rash, or hives.
- Decrease in blood pressure when you change positions (orthostatic hypotension).Some people may feel dizzy, get a fast heartbeat, or feel light-headed right after injecting YORVIPATH. For the first few doses, give your injection of YORVIPATH in a place where you can sit or lie down right away if you get these symptoms. If your symptoms get worse or do not go away, contact your healthcare provider before you continue using YORVIPATH.
- Digoxin toxicity if you are using digoxin and YORVIPATH at the same time.Tell your healthcare provider if you experience irregular heart rhythm, heart palpitations, confusion, loss of appetite, nausea, vomiting, diarrhea, or vision problems.
The most common side effects of YORVIPATH includeinjection site reactions, vasodilatory signs or symptoms such as a drop in blood pressure or lightheadedness when standing up, headache, diarrhea, back pain, high calcium levels, and sore throat.
These are not all of the possible side effects of YORVIPATH. Call your doctor for medical advice about side effects. You are encouraged to report side effects to FDAwww.fda.gov/medwatch. You may also report side effects to Ascendis Pharma at 1-844-442-7236.
What is YORVIPATH used for?
YORVIPATH is a prescription medicine used to treat adults with low parathyroid hormone (PTH) (hypoparathyroidism).
- It is not known if YORVIPATH is safe and effective in people who have been recently diagnosed with hypoparathyroidism after surgery, or if it is started in people with low levels of calcium in the blood.
- It is not known if YORVIPATH is safe and effective in children.
- YORVIPATH should not be used in children and young adults whose bones are still growing.
Please click here for fullPrescribing Information for YORVIPATH andMedication Guide.
For more information about YORVIPATH, please visit www.yorvipath.com or call +1 844-442-7236.
Source: BrandPoint
