Dealing with an extremely rare disease such as Plasminogen Deficiency can be very difficult for the family members as well. Dr. Bein covers the main challenges that parents and siblings may encounter. Want to learn more? Join the community! pts.plasminogen.com
Hello, my name is Sarah Bein, and I’m a Physician based in California. Today I’d like to speak with you about Plasminogen Deficiency, and its impact on the family members.
One of the main challenge that family members face, is dealing with the unknown. Families are often completely isolated. This is deeply difficult as they can be concerned about the future, and how the disease will progress.
Plasminogen deficiency often reveals itself as, Ligneous Conjunctivitis. This condition can alter a child’s appearance with red swollen eyelids, and fibrous lesions. These patients often feel or look different to other children, and can be teased at school. For siblings of similar ages, it can be very difficult to watch their sibling be teased, or singled out for looking different. It can put enormous stress on that sibling to protect their brother or sister.
It can also be difficult for parents. Parents are often in the painful position of having to explain why some children are treating them differently. They can also feel challenged in their own social groups. Other parents might be afraid that the condition is “contagious,” and affect their own children.
Managing a chronic illness usually requires frequent doctors’ visits and procedures. This can cause myriad challenges to the family unit. It can be disruptive to family time, with at least one parent away with the affected child. It can also cut into time, that might have been otherwise set aside for activities or hobbies. It does limit the quality time that the family spend together.
Siblings’ reaction might vary as they may, or may not be affected with the condition themselves. If they’re not, it can be very emotionally challenging to watch their sibling go through the pain and suffering. They can often suffer with feelings of guilt that they were unaffected by this condition.
It is also quite common that one sibling has a more severe case of the illness than another. This can bring up complicated emotional challenges as well, such as unfairness, guilt, envy, or jealousy.
My advice to families, would be to try to build as normal of a life as possible for your child affected with the condition. It is crucial to help your child feel that they have a life outside of being a rare disease patient. You can help them build a good social network amongst family and friends. Being included in hobbies and activities can develop connections with others, and help patients to feel normal.
As a parent, it is also very important to learn to be an advocate for your child. Get as educated as you possibly can, about the disease, symptoms, and treatment. Try to connect with other patients and families who are going through a similar journey.
Avoiding colds and flues is also very important. Often, lesions can develop from inflammation, local infection, or even an allergy. Traveling with hand sanitizer and face masks is much advised. Increasing general awareness amongst family members is key to prevent the spread between siblings and parents.
Dealing with an ultra-rare disease such as plasminogen deficiency can be difficult for all the family members. If you want to learn more about Plasminogen Deficiency, or join the community, visit pts.plasminogen.com. Thank you very much for listening
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