When the next options for finding medical help for Alicia failed, I booked private meetings with specialists dealing with rare diseases. We already had suspicions that these are rare diseases and that is why I contacted doctors who know how to diagnose patients with such diseases.
Even for a private visit, we had to wait several months. There are so few specialists in the UK. In March, we were in a private clinic in London with one of the best specialists in the field of dysautonomia. Paddington reminded us of a nice Paddington teddy bear and the births of subsequent Royal Babies. Now Paddington has taken on a completely new, more personal and dramatic meaning for us.
During the first appointment with Professor Mathias at London’s St Mary’s Paddington Hospital at the Lindo Wing clinic, we talked about the symptoms and history of Alice and the first study was conducted. On this visit, the professor said that Alicja qualifies for further specialist tests at his clinic. We waited impatiently for almost a month. Why does it have to last so long …
Another trip to London. This time to St John and St Elizabeth Hospital in the St Johns Wood London, where the clinic of dysautonomia of Professor Mathias is located. In mid-April, for two days Alice was subjected to intensive tests. Connected to diagnostic equipment, she had to perform a number of tasks. One of the most important tests was the tilt table test. Alicia`s heart and blood pressure was monitored for 24 hours during the different activities and recommended actions. After a number of tests, she was exhausted and sore. Two days before and during the tests she had to discontinue all medications, which made this time extremely painful.
At the same time, I wrote the first entry on Facebook and we started a fundraising campaign, thanks to which we are to raise funds for the surgery in Barcelona. As you can see, many important things have happened at the same time.
A week later, we had a follow-up appointment with the professor and a summary of the test results. Two days earlier in the Lindo Wing, the Royal Baby was born, we were here to know the answer what alienated Alicia. What turned out? During the conversation, we discussed the test results and professor confirmed that Alicia suffers from POTS. You may ask, what POTS is.
POTS is an abbreviation of Postural Tachycardia Syndrome. POTS is a chronic and debilitating disease. Simply getting up can be quite a challenge for people with POTS because their bodies are unable to adapt to gravity. POTS is characterized by orthostatic intolerance (the development of symptoms in a vertical position, which is relieved while lying down). Symptoms include a headache, fatigue, palpitations, sweating, nausea, fainting and dizziness and are associated with an increase in heart rate from a supine to a vertical position greater than 30 beats per minute or a heart rate greater than 120 beats per minute over 10 minutes of standing. You can live with it and you can partially control this disease through an appropriate lifestyle and medication. Find out more about Postural Tachycardia Syndrome on POTS UK website.
After the diagnosis, the treatment is being tested. The professor also wrote to other consultants who take care of Alicia and asked for further urgent research in connection with the suspicion of subsequent rare diseases.
Important information for people interested in POTS and dysautonomia – an appointment with Prof. Christopher Mathias can be booked on www.hje.org.uk/consultants/professor-christopher-mathias. Professor Christopher Mathias welcomes patients in two London hospitals: the clinic at St Mary’s Hospital, Lindo Wing in Paddington (only visits) and at the Dysautonomy Clinic at St John’s and St. Elizabeth Hospital in St John’s Wood (visits and medical tests). Although it is a private visit, you will have to wait several months. He is one of the best dysautonomia and POTS specialists in the UK. Already retired, but fortunately, he constantly accepts patients. The first appointment costs 360 pounds.
Professor Christopher Mathias is a wonderful man, he is a world-class specialist. You have to wait a few months for a private appointment with the professor. Patients from all over Europe are coming to see him.
Prof Mathias was the first doctor in the United Kingdom who took us so seriously. Before he met with us, he got acquainted with the medical history of Alicia and with his current symptoms. He has a great sense of humour and can listen carefully. For the first time, we even joked and laughed during a doctor’s visit. It gives the patients hope, restores faith in doctors. He cares much more than in consultations with his field. If you need to be directed to other specialists, he sends a letter to them and helps to book an appointment. He responds to emails with questions, serves other doctors advice on issues related to dysautonomia. If they have any doubts about Alicia’s treatment, he will be happy to contact them. Because they do not need to know everything, it’s important that they have an open mind. He sent POTS information to our GP. This is a novelty for us, a very busy specialist finds time to advise the family doctor and other doctors how to deal with such a disease.
Sometimes I ask myself a question – Is it possible for one person to have so many diseases, in addition, rare ones? Is it possible that none of the doctors for a reason in the right place? But looking at the fate of other patients, we know that it is not only we who fight such a battle. These rare diseases mainly affect women. We are in contact with some of them. They are so incredibly brave, strong and bold. We have also entered this world and we must find our future here. We also know that we will be able to advise and help others later.
Thank you for your donations. You can help us here – www.gofundme.com/liferoralicia.
Alicia is on the edge and needs your help now. She suffers from rare diseases and is going to have life-saving surgery. We also need to raise funds for additional costs related to a neurological surgery in Spain and further medical tests for EDS, POTS and MCAS. Please, help us to Save Alicia`s Life.