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We Are the Parents of the Undiagnosed


We are the parents of the undiagnosed: the rare, the one-of-a-kind.

We are challenging science, writing the medical books, forging our own paths.

Our challenges may begin in the womb, at birth or many years later. We may remain undiagnosed for a short time, a long time or forever. Even if we get a diagnosis it may be so rare that it adds little to our knowledge.

We know every department of every hospital, we have stayed on every ward; we are welcomed as an old friend each time we visit.

We worry at every new symptom but have become adept at downplaying our problems.

We struggle to access the health, educational and social care services, funding and benefits we need; even simple things like travel insurance are difficult to get. We desperately need co-ordinated care and support; usually it is up to us to coordinate our own care and support.

We are sick of having to list all our symptoms on every form, sick of invasive and non-invasive testing, sick of not being taken seriously at all.

We have no idea what the future holds: will they walk? Will they talk? How long might they live? We must plan for outliving our children and prepare our children to outlive us.

We don’t fit into the usual support groups. We feel we don’t belong anywhere, but together we support each other, and we are thousands more each year. We each have different symptoms; we each face different challenges. We all share the experience, the highs, the lows, the despair and the humor, of being the parents of the undiagnosed.

If you, or someone you love, is one of the undiagnosed, welcome! Be strong in the knowledge that you are unique, you are the expert on your condition.

You can also join us in SWAN UK — the only specialist support in the U.K. for families of children with undiagnosed genetic conditions.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. Check out our Submit a Story page for more about our submission guidelines.