Esther was diagnosed with Elhers Danlos and POTS on the 19th March
After many years of seeking reasons why Esther was experiencing so many symptoms we decided to go to see a Professor who is one of the world's leading experts on Elhers- Danlos /HMS . The Dr's had referred to Esther having hyper mobility but were not investigating any of Esther's other symptoms.
Esther wrote a long report about her health and how she had been treated. I wrote all the family history which included a great Grandmother who could put her hands flat on the floor in her 80's. I also photocopied all letters and reports for Professor Graham to look at and took photos of Esther's hyper mobility.
We drove to a train station in London, parked the car and got the tube to St. John's wood. It was very quiet because it was the middle of the afternoon. We finally arrived at the reception and were given a questionnaire for Esther to fill in.
We had arrived early and so sat down to wait to see the Professor. Finally Esther's name was called out. We went in and were surprised to meet a very kind elderly looking man with white hair. We gave him Esther's report with the family history, the various medical letters and the photos of Esther doing various hyper mobile moves. He said this was very helpful and Esther looked very hyper mobile in the photos. He said I was a very good photographer which made me smile. He asked
us if we knew what Esther's answers to the questionnaire indicated and we said we didn't know. He said it meant she had POTS but he would come to that later.
The Professor asked a lot of questions about our family history, Esther's childhood, when she started with symptoms, how was she at writing, was she able to catch a ball, did she have stretch mark, too many questions to remember. He wanted to know about the pain how often and what it was like. Finally he examined Esther, he began by measuring her arm span against the wall. He asked her to roll her trousers up and to take off her shoes and socks. Every part of her body was measured for hyper mobility, he even checked to see if her tongue could touch her nose and if there was a flap of skin missing under her tongue which she could and there was. Finally he took her blood pressure and pulse rate with her lying down and standing up. Her said her feet were changing colour which meant the blood was pooling in her feet. Her pulse rate rose to 127 which along with her symptoms meant she definitely has POTS.
Finally he checked Esther's skin and said it was very stretchy and soft which is another indication for Elhers Danlos. He said Esther really needed treatment and said he would write letters to the various Doctors and consultants with the diagnosis of Elhers Danlos and POTS.
On the way home I looked up POTS on my phone and was shocked to see how many of the symptoms fitted with Esther. Here is a link to the list of symptoms. I suddenly felt guilty for encouraging Esther to carry on when she feels awful after standing or walking. It explained so much even her stomach problems, how could paediatric rheumatologists miss this?
Esther wrote a long report about her health and how she had been treated. I wrote all the family history which included a great Grandmother who could put her hands flat on the floor in her 80's. I also photocopied all letters and reports for Professor Graham to look at and took photos of Esther's hyper mobility.
We drove to a train station in London, parked the car and got the tube to St. John's wood. It was very quiet because it was the middle of the afternoon. We finally arrived at the reception and were given a questionnaire for Esther to fill in.
We had arrived early and so sat down to wait to see the Professor. Finally Esther's name was called out. We went in and were surprised to meet a very kind elderly looking man with white hair. We gave him Esther's report with the family history, the various medical letters and the photos of Esther doing various hyper mobile moves. He said this was very helpful and Esther looked very hyper mobile in the photos. He said I was a very good photographer which made me smile. He asked
us if we knew what Esther's answers to the questionnaire indicated and we said we didn't know. He said it meant she had POTS but he would come to that later.
The Professor asked a lot of questions about our family history, Esther's childhood, when she started with symptoms, how was she at writing, was she able to catch a ball, did she have stretch mark, too many questions to remember. He wanted to know about the pain how often and what it was like. Finally he examined Esther, he began by measuring her arm span against the wall. He asked her to roll her trousers up and to take off her shoes and socks. Every part of her body was measured for hyper mobility, he even checked to see if her tongue could touch her nose and if there was a flap of skin missing under her tongue which she could and there was. Finally he took her blood pressure and pulse rate with her lying down and standing up. Her said her feet were changing colour which meant the blood was pooling in her feet. Her pulse rate rose to 127 which along with her symptoms meant she definitely has POTS.
Finally he checked Esther's skin and said it was very stretchy and soft which is another indication for Elhers Danlos. He said Esther really needed treatment and said he would write letters to the various Doctors and consultants with the diagnosis of Elhers Danlos and POTS.
On the way home I looked up POTS on my phone and was shocked to see how many of the symptoms fitted with Esther. Here is a link to the list of symptoms. I suddenly felt guilty for encouraging Esther to carry on when she feels awful after standing or walking. It explained so much even her stomach problems, how could paediatric rheumatologists miss this?
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