Share4Rare: helping to tackle problems faced by parents of children with rare diseases
When your child is diagnosed with a rare disease — or he/she is still undiagnosed —parenthood becomes harder than expected. You face complete uncertainty as you probably know nothing about that specific pathology or about how it will evolve in the future. Besides, you feel that nobody understands you. Not even your family doctor. You see how the ones who were supposed to give you advice and reliable information about your child’s illness now are unable to make deep statements probably due to their limited lack of knowledge about your child’s disease.
Having a child with a rare condition also means that family economy is probably going to be highly affected owing to the potential treatments and medical procedures that your child will require. Unfortunately, many treatments are not included in social security programs, becoming a severe economic burden for the family. Besides, you may see yourself forced to reduce your working hours or quit full-time jobs to become a caregiver of your own child— this is even more usual if you are the mother —, which might reduce the earnings of the family precisely when those earnings are more necessary than ever. You enter then a vicious circle of impoverishment that is quite harsh to manage. Not surprisingly, financial stress is one of the most shared concerns of parents facing a pediatric rare disease.
The daily care of a sick child can also affect your social sphere. If becoming a father or a mother already makes you pretty unavailable for frequent social gatherings with friends and colleagues, the social cost of parenting a child with a rare disease is much higher. Most parents state that their social circle diminishes as time goes by and add that even friends who used to be very supportive at the beginning — when the child is diagnosed or the illness becomes evident —usually stop giving support over time even though the family situation has not changed significantly. It is beyond doubt that this will cause you a great emotional stress, making you feel anxious, frustrated, insecure, socially isolated and lonely.
Another major challenge you may have to face has to do with the experience of navigating the healthcare system and the involvement of your hospital and reference doctors on your child’s case. Most paediatricians are not familiar with many of the identified rare disorders and they will probably refer your child to diverse specialists in order to get a general picture of the situation. Visiting so many doctors at a time is not easy to handle. Plus, these clinicians are not coordinated, so it is possible that you will have to assume the role of care coordinator as well. Having access to experienced geneticists and specific genetic testing is usually hard too. On the other hand, parents often claim that their part as expert caregivers is poorly understood by healthcare providers and they demand more egalitarian relationships. What you are actually saying is that medical experts should listen to you more because you feel that you have no voice despite being a proved expert on your child’s disease. This has to be changed.
Add to all these hurdles the difficulty to find reliable information on your child’s disease and to get in touch with other families who share your same concerns and the molehill already turns into a mountain.
In this context, Share4Rare arrives to help you to overcome this turmoil of obstacles, feelings and fears. Our digital platform always prioritizes patients and families and it will be constantly adapted to your needs. When joining the platform, you will be in touch with people all around the world who share the same concerns. You will be able to give and to receive advice, creating a beautiful framework of collective intelligence that may ultimately help academics and clinicians to improve the lives of children with rare diseases thanks to research. In fact, these experts will be part of the platform too, backing all the curated medical content and helping to clarify the science-related inquiries of the users. In essence, Share4Rare is here for you to learn about other parents’ experiences while you participate in scientific advancement. Do you need more reasons to join the project? Register now!