Caregivers and Loeys-Dietz Syndrome: Navigate your Journey and Find Support

Two people holding hands

Caregivers play an invaluable role in the lives of people with Loeys-Dietz syndrome (LDS).

However, caregiving can be challenging. It is important to talk about navigating this journey and finding support. In this article, we cover:

  • Who are caregivers?
  • Caring for people with LDS
  • Caregiving experiences
  • Tips and tricks
  • Where to find support
  • Financial assistance
  • How to a caregiver

In honour of National Caregiver Day, this article is dedicated to the many LDS caregivers and the people supporting them. From all of us at the Loeys-Dietz Syndrome Foundation Canada, thank you for all that you do.

Who are Caregivers?

Caregiving is any work in which someone (a caregiver) gives up a significant portion of their time to secure the well-being of someone else (a care recipient). Caregiving comes in many forms. Physical assistance, meal preparation, transportation to and from medical appointments, medication tracking and administering, and emotional support are all examples of caregiving.

Caregiving can be a demanding, complex, and emotionally-charged role. Caregivers, especially those who are unpaid, require assistance and care, and it is important to raise awareness about their needs.

Caregiving and Loeys-Dietz Syndrome

LDS is a rare and genetic connective tissue disorder with a wide spectrum of symptoms. Given its rarity and complexity, caring for someone with LDS has important medical, emotional, genetic, and advocacy considerations.

Medical Care

LDS can affect individuals from head-to-toe and is best managed with multidisciplinary care. For caregivers, this means keeping track of a variety of medical providers, appointments, and medications. It can also mean much time and energy spent navigating the healthcare system to find multidisciplinary care. For a list of clinics familiar with LDS, consult our directory.

Partnerships and shared decision-making between caregivers and healthcare professionals are important. Trust and communication are needed to gather valuable information from caregivers, expedite evaluations, book regular appointments, and build and implement care plans.


Caregivers of LDS patients may feel emotions such as anxiety, fear, and isolation. It can be difficult to care for a loved one who may be experiencing discomfort, pain, or life-threatening complications.

Support from friends, family, professionals, and caregiver- or LDS-specific networks can help.

For a caregiver support network, visit Carers Canada or a provincial network near you

For peer support, visit a community-run, private Facebook group: Loeys-Dietz Families.

For the Foundation’s LDS helpline, call us at 1-888-LDS-FCAN.


As a genetic condition, LDS may affect several people in the same family. In these cases, caregivers may be supporting more than one person at a time and may also have LDS. This can mean additional responsibilities and a more demanding role for the caregiver.


As a rare and recently-described condition (described in 2005) LDS is generally less well-known. Caregivers often double as activists to increase LDS awareness both in the medical community and in their personal lives.

Caregiving Experiences

It’s normal for caregivers to describe their experiences differently, and for these views to change over time.

Here are some ways that caregiving has been described:

  • Act of love: Caregiving is a profoundly meaningful act.
  • Quality time: Caring for a loved one means more time spent them and may strengthen your relationship with them.
  • Supportive friends and family: Caregiving can highlight the people in your life who are willing to offer help, keep you company, and actively listen to you talk about tough times.
  • Peace of mind: Knowing that your loved one is well-cared for may offer some peace of mind.
  • Personal strength: Your compassion, strengths, and ability to support and advocate for someone else is worth acknowledging.
  • Financial strain: Caregiving may come with expenses including transportation, prescriptions, over-the-counter medications, and house modifications. This may limit the carer’s capacity to spend money on themselves and may jeopardize their current or future financial stability.
  • Greater risk of health problems: Too much stress, especially built up over a long time, can harm your health. It is reported that caregivers have a higher risk of depression, anxiety, heart disease, or diabetes.
  • Lack of control: As a caregiver, there are aspects that can affect the care recipient and that are outside of your control. This can cause feelings of anger and guilt, even though it has nothing to do with how “good” you are at being a caregiver.
  • Impact on relationships: Caregiving can sometimes strain relationships with family members or friends. It can also cause feelings of loneliness and isolation.
  • Caregiver burnout: Burnout affects caregivers in three ways: physically, emotionally, and mentally. It might be followed by a shift in attitude and lack of interest. Caregivers may experience burnout if they do not receive the support they require or if they seek to do more than physically or financially possible. It can help to know the signs of caregiver burnout.

What do caregivers have to say?

  • To hear from an LDS caregiver, click here.
  • To hear from other caregivers, check out a special CBC series here.

Navigating your Loeys-Dietz Syndrome Caregiving Journey 

To help you navigate your caregiving journey, we have listed some general tips and tricks and ways to find support and financial assistance.

Tips and Tricks

For the Care Recipient:

  • Find multidisciplinary clinics: Navigating the healthcare system can be extremely difficult, especially when trying to find multiple healthcare professionals to manage the multi-systemic symptoms of LDS. A multidisciplinary team or clinic that is familiar with LDS can help you to locate the needed healthcare professionals, improve communication between providers, and group multiple appointments into one day and location. Find clinics familiar with LDS here, or contact us for more options.
  • Communicate: Open and honest communication with your care recipient can help to validate their experiences, ensure their needs are being met, and allow them to make as many decisions as possible. When issues or difficult emotions arise, it can help to first express your emotional response and possible solutions with others (other caregivers, friends, family, or professionals) and then to discuss potential solutions with the care recipient.

For the Caregiver:

  • Be kind to yourself: It is normal to doubt your ability as a caregiver, and sometimes things happen that are outside of your control. Try to make the best of the current moment, the things in your control, and be kind to yourself.
  • Pay attention to your needs: Caregivers who pay attention to their own physical and emotional health, time, and boundaries are better equipped to handle the challenges of supporting someone else. Looking after yourself is different for everyone but can include understanding how stress affects you, exercising regularly, eating well, getting enough sleep, avoiding alcohol and drugs, practicing relaxation exercises, building habits that set you up for future success, taking regular breaks, staying engaged with your own interests, and maintaining friendships.
  • Acknowledge the bad: You may experience difficult and intense emotions and may feel frustrated, sad, stressed, tired, isolated, or scared. It is okay to acknowledge how you are feeling and to know that caregiving is not easy.
  • Acknowledge the good: Recognizing the positive aspects of your day can help you to have a better day. Try writing down one positive thing each day or week, even if the good thing is minor.
  • Join LDS and caregiver communities: Getting involved in these communities can help you to find answers and feel understood and heard. The person you are caring for may also benefit from joining an LDS or other group. Find a community for you by reaching out to our Foundation, Facebook groups such as Loeys-Dietz Families, or resources listed at the end of this article.
  • Share your feelings, thoughts, and caregiving role: Look for friends, family members, other caregivers, or mental health professionals who can listen to and support you in a way that feels helpful to you. To find a mental health professional near you, click here or here.
  • Ask others around you for practical help: It is okay if you cannot do it all. You may want to add another caregiver for your loved one or ask people in your life to help out with specific tasks. Helping out can look like bringing the care recipient to medical appointments, providing care on specific days of the week, looking after other children or pets in the family, or handling some household chores.

Want to learn more?

  • To learn more about compassion fatigue and how to manage it, click here.
  • To learn more about self-care coping tools for caregivers, click here.
Find Support

Caregiver holding someone's handCaring for someone else also involves caring for yourself. As Loeys-Dietz syndrome caregiving can be complex and emotionally-charged, it may be helpful to reach out for specific support: caregiver support, LDS support, and professional support.

Caregiver support networks offer a variety of services, including support groups and communities, caregiver coaches, information sessions, educational courses, workshops, support/help lines, webinars, toolkits, podcasts, financial support, and more. To join a network, visit Carers Canada or find a provincial network near you. For a network offering disability-specific resources, visit Family Alliance Ontario.

You can find LDS support by contacting the Loeys-Dietz Syndrome Foundation Canada or Loeys-Dietz Families, a community-run, private Facebook group.

If you have the means, you may also consider hiring professional support such as a professional caregiver, support worker, or cleaner to tackle items on your to-do-list. These individuals can help you with daily life activities, such as laundry, grocery shopping, driving to appointments, meal preparation, medication reminding, cleaning, etc. They can also help with hospital care in case of surgeries. For emotional support, you may want to speak to a mental health professional. Find one here or here.

Find Financial Assistance

There are several financial assistance programs offered in Canada:

Do You Know a Loeys-Dietz Syndrome Caregiver?

Refer a caregiver: You support a caregiver in your life by letting them know of the services you learned about within this newsletter. You can also refer a caregiver to the following caregiver support networks: Caregivers Alberta, Caregivers Nova Scotia, and Family Caregivers of British Columbia.

Help a caregiver:

Friends and family can create a community of care by:

  • Asking the caregiver what they would like help with;
  • Sharing tasks related to caregiving or daily life;
  • Spending time with the care recipient;
  • Caring for the caregiver by listening to their experience, helping them recognize stress, watching for signs of burnout, and encouraging and supporting their wellness efforts.

For 100 more ways to help a caregiver in your life, visit the Alzheimer’s association’s “100+ Ways to Support Caregivers by Sharing the Care”.


General resources:

  • For peer support, visit a community-run, private Facebook group: Loeys-Dietz Families.
  • For signs and symptoms of LDS, check out our diagnostic Head to Toe.
  • For the Foundation’s resource directory, click here.
  • For the Foundation’s LDS helpline, call us at 1-888-LDS-FCAN.
  • For clinics familiar with LDS, click here.

Caregiver resources:


AGS Health in Aging Foundation. Tip Sheet: How To Be the Best Caregiver You Can Be. [updated 2019 Jun; cited 2022 Feb 27]. Available from:

American Academy of Family Physicians. Caregiver Stress. [updated 2019 Jul 21; cited 2022 Feb 27]. Available from:

Arthritis Society. Top 10 Caregiver Do’s and Don’ts. [cited 2022 Feb 27]. Available from:

 Bernstein D. The Importance of Caregiving to Quality of Life. Caregiver Services; [cited 2022 Feb 27]. Available from:

Cardinali P, Migliorini L, Rania N. 2019. The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions. Frontiers in Psychology. 10:1780.

Hahn-Goldberg S et al. 2018. “We are doing it together”; The integral role of caregivers in a patients’ transition home from the medicine unit. PLoS One. 13(5): e0197831.

Hobbs R. How to Navigate Your Caregiving Journey. A Healthier Michigan; [cited 2022 Feb 27]. Available from:

Jones S. 2014. The Benefits of Caregiving. Qualicare; [cited 2022 Feb 27]. Available from:

Krishnan S et al. 2017. Coping with Caregiver Burnout When Caring for a Person With Neurodegenerative Disease: A Guide for Caregivers. Physical Medicine and Rehabilitation. 98(4):805-807.

Loughborough WW et al. 2018. Cardiovascular Manifestations and Complications of Loeys-Dietz Syndrome: CT and MR Imaging Findings. 38(1).

Mayo Clinic. 2022. Caregiver stress: Tips for taking care of yourself. [cited 2022 Mar 22]. Available from:

Niksa A. 2019. Unexpected Pros and Cons to Being a Family Caregiver. Love In Home Senior Care; [cited 2022 Feb 27]. Available from:

Ontario Caregiver Organization. About Ontario Caregivers. [cited 2022 Feb 27]. Available from:

Rouse L. 2020. Family Caregivers and an Integral, Under-Appreciated Force. Texas A&M Health; [cited 2022 Feb 27]. Available from:

Schulz R, Sherwood PR. 2008. Physical and Mental Health Effects of Family Caregiving. American Journal of Nursing. 108(9):23-27.

Scott L. Expert Advice on Dealing With Caregiver Burnout. Alberta Cancer Foundation; [cited 2022 Feb 27]. Available from:

Singleton D. 2019. The Surprising Benefits of Being a Caregiver. Cleveland Clinic; [cited 2022 Feb 27]. Available from:

WeCare Saude. 2019. The Benefits of Being a Caregiver at Home. [cited 2022 Feb 27]. Available from:

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