CLICK THE DIFFERENT SUBJECT TITLES BELOW TO FIND OUT MORE ABOUT EACH.

Coping

How is your psychological first-aid kit looking? Having a rare disease or condition in the family can mean living with uncertainty, upset and frustration as you try to navigate the care that is needed. There are lots of different ways that we respond when we are under pressure or witnessing a loved one struggle to thrive. Everyone is different and there is no right or wrong way to feel.

Mental Wellbeing

Dealing with a rare disease does not always have a big impact on your mental wellbeing but we know from our families that it can. You may find that your mood goes both up and down and in this resource we look at ways that you could help monitor this.

Relationship Difficulties

Having a child diagnosed with a rare disease, or being diagnosed yourself, can have an impact on a couple’s relationship or on the relationship with wider family. It can make the family unit feel stronger and united. However, not everyone reacts to diagnosis, difference or uncertainty in the same way. You might find relationships become more strained with a co-parent, your partner or other family members and friends. Sometimes this happens as people try to cope in their own way, which may be different to yours.

Sharing the Diagnosis

Some rare diseases present obvious features or symptoms, making it more likely you’ll be asked about the condition. Others are less obvious and people may not notice unless you tell them. Whether your condition is visible or not visible, you may be on a diagnostic journey because rare conditions can be tricky to identify. When you do obtain a diagnosis, which could be clinical (based on a doctors examination) or genetic (based on a genetic analysis of a blood sample), you will need to think about telling people.