How can we help you?

Have you or has a family member been diagnosed with a Complex Lymphatic Anomaly? You must have a million questions. Or none because you don’t know where to start. We are here to help you and your family finding the support you need, providing you and your doctors with knowledge and to have hope for the future.

mary
“Having a child diagnosed with an extremely rare disease was a life changing event in our family. The LGD Alliance Europe has allowed us to connect with a worldwide group of families just like our”

Mary Keniry, Ireland

On this page

Living with this disease

Your Patient Journey

Unfortunately, every patient will have a unique experience of his or her Complex Lymphatic Anomaly. Therefore the LGD Alliance and several patients have constructed an overview of the possible things you may experience throughout your life. Your experiences will be your Patient Journey.

Assisted by the Patient Journey document, every patient can be aware of the changes and challenges ahead in life. And the Patient Journey document gives you an opportunity to have a more consistent talk with your doctor about your challenges.

A daily learning experience

Living with a rare disease is a daily learning experience for patients and families. You have to deal with doctors, specialists, nurses, insurance companies, hospitals, pharmacies, transport, school, work, friends, neighbours and so on. And then that is without mention the pain, grief, fear and anger you are dealing with as well.

This disease is hard to understand, so your family, friends and others will have a hard time understanding it too.

How well people can function and how long they survive with Complex Lymphatic Anomalies varies. It depends on how severely the disease affects each person’s body. Mild disease may remain stable for many years, while severe cases involving the craniofacial and/or thoracic areas may be fatal. Complex Lymphatic Anomalies are most serious for those whose lungs are affected. Some patients have survived far into adulthood.

There are many articles, blogs and so on about dealing with an incurable, life-threatening and/or rare disease. Not all of them will apply to you or your demands, but it may help you. We will post some of them here.

Share Your Experience

We’re growing and we’re glad you found us. Our community includes patients, their family members and friends, physicians, and members of other organizations dedicated to support and research of lymphatic, bone, and other rare diseases.

Support Groups via Facebook

For adult patients and the parents of patients under the age of 18 we maintain a private Facebook group. This group was created as a safe place where patients and parents can share experiences about living with Complex Lymphatic Anomalies. This group and the posts made here will not show up in searches and no one who is not an approved member will know who is in the group or be able to see anything posted here. Membership is by invitation only.

The Friends & Family Group on Facebook was created as a place where people can share their experiences related to caring for someone who is living with a Complex Lymphatic Anomaly. Here we hope family members and close friends of patients will find a place where they are comfortable sharing their experiences in a supportive environment with a group of people who are dealing with the same concerns.

Public Facebook Page

The LGD Alliance Europe has a public Facebook page anyone can “like” where we post information about events happening in our community, links to new stories, and links to other things on the internet that may be interesting to members of our community.

Follow the LGD Alliance on Twitter

You can follow the LGD Alliance Europe on twitter: @LGDAlliance_EU

You can follow the LGD Alliance on twitter: @LGDAlliance

Patient matching programme

Finding the closest match

GLA and GSD are extraordinarily rare conditions and a strong support system is invaluable in helping patients and their families cope with the diagnosis and living with the conditions. One way the LGDA assists patients and families in finding this support is by facilitating introductions to others.

Our patient support team looks for patients of similar age; undergoing the same or similar treatment; and/or living nearest to one another and, when both sides are agreeable, makes introductions. Because the conditions are so rare, an exact match is unlikely, but we do try to find the closest match for each situation. Many of these matched patients and families form strong bonds and report tremendous relief in knowing they are not alone and having someone with whom they can share their feelings, hopes, fear, and frustrations.

We also provide the matching assistance for families who have lost a loved one to one of these diseases.

If you are interested in participating in the Patient Matching Program, please complete and submit the Patient Matching Registration form and someone from our support team will contact you when we have located a potential patch.

Finding a physician

Are you having trouble finding a doctor for yourself or your loved one?
Because Complex Lymphatic Anomalies are vascular anomalies that can affect multiple systems with many variables, the multidisciplinary approach used in Vascular Anomalies Centres (VACs) is often necessary for diagnosis and treatment. Most VACs are located in paediatric hospitals in large metropolitan areas, but some also accept adults and most will review the cases of patients of any age. And there are paediatric doctors who will act as consultants for the primary physicians of adult patients.

If you need help to locate a physician or specialist or centre experienced with your particular situation, contact us via the patient support form.

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