Just been told that you or your child has Proteus or KT?
We know from experience how difficult it is to hear that that you or your child has been diagnosed with a rare overgrowth condition. You are usually desperate for information, to know what the future will bring and if possible to talk with someone who has already walked this path.
That, is where we come in.
Because Proteus and KT are so rare, knowledge in the medical profession is very limited and it is likely that your local consultant and GP will never have encountered the condition. To have received a diagnosis will probably mean that you have been referred to a specialist who has experience with these conditions, but due to the array of specialities that will be needed for care and treatment, it is usually recommended that you access specialist multi disciplinary clinics at either a Children’s Hospital or a specialist adult clinic.
Great Ormond Street Hospital for children hold specialist multi disciplinary clinics for children living with segmental overgrowth conditions, including Proteus and KT. They see patients from across the UK and the referral to their clinics can be obtained through your local hospital consultant or GP.
The Royal Free Hospital in Hampstead has a specialist adult clinic and cares for many living with overgrowth conditions. It specialises in the vascular complexities but can bring in other specialists, It specialises in the vascular complexities but can bring in other specialists such as orthopaedic, as needed.
Always good to have a chat
Most of our families will tell you what a relief it was to be able to talk with someone, perhaps a mum or dad of a child living with KT, or an adult who received their diagnosis late in life, or a woman who had gone through pregnancy whilst living with KT. We can provide not only contact through our support line 01785 661263 but through our Family Network, contact with other families in similar circumstances, who understand. Give us a call, we are happy to help where we can.
You or your doctor may be unsure whether you have an overgrowth condition. We can provide referral details to specialists that will be able to clarify your condition. Please contact us if you think this would be helpful.