My name is Jodie and I have Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS) along with a long list of secondary illnesses. I have made this website to help raise awareness of these rare illnesses.
I hope that sharing my story will reach out to other sufferers and proffesionals to make these illnesses seen. They are not as rare as people think.
I have always been a sickly child more so than other children. at the age of 7 I developed glandular fever and I was extremely ill with this. After that my immune system was shattered and I have been susceptible to getting ill ever since. I started getting extremely fatigued at the age of 11-13 and started having faints and seizures from the age of 14. I was forever in and out of hospital I was faced with doctors not believing me saying i was "attention seeking" or "faking it" (this has been said to alot of POTS sufferers) Their attitude towards someone who presents well on the outside to them means that the person is well and fine. That is not the case. A person with POTS presents very well on the outside but inside they are suffering a huge amount. I hade extensive testing done and nothing was found, until they did the tilt table test which, came back posititve. The tilt table test is the key to diagnose POTS. Following this they sent me to london to see the specialist to have full autonomic nervous system testing. Then after this I was sent to an EDS specialist and had genetic testing done and there my EDS was confirmed and diagnosed it was revealed that I have had it since birth and it runs throughout my family.
I am currently very unwell with POTS at the moment and my body is under a huge amount of pressure from my symptoms my heart rate is constantly high, upon standing my heart rate is 120-246!..I am very sick a lot of the time and weak and very dizzy. I am having fainting spells almost everyday and am suffering convulsions too...only 3% of POTS patients suffer convulsions. I suffer from Hypovolemia which is a state of decreased blood volume and decrease in volume of blood plasma. Hypovolemia is characterized by salt (sodium) depletion and thus differs from dehydration, which is defined as excessive loss of body water. Some doctors do not even know the difference between Hypovolemia and Dehydration..Hypovolemia is caused by a state of dehydration in a person with POTS and there fore means they have blood volume loss NOT water loss (dehydration) because POTS patients have blood vessels that are far too relaxed and there is not enough fluid to fill these vessels causing blood pooling and blood volume loss. It is important to increase fluid and salt intake when suffering with POTS to help prevent this. when I get this I get severe tachycardia, dizziness and fainting, dry mouth and eyes, pale skin, cold extremities, blood pooling, nausea and vomiting, confusion and memory loss and much more to treat your supposed to be given IV fluids sodium or potassium based. doctors in A&E often are caught out saying to POTS patients.."you do not look dehydrated" which is an absolute disgrace!..one does not look unwell so there fore one cant be sick..WRONG!..the whole point to an invisible illness is to be INVISIBLE. blood tests will come back "normal" in POTS patients as it is not just simple dehydration this is what most doctors do not get which i find highly disturbing..these people are the ones we put our lives into their hands...scary huh? I have other heart problems going on which are being referred to a specialist. I am currently on a lot of medications to keep me stable and I am on a syringe driver for my sickness at home 24/7. I do have gastroparesis and I am being sent to a gastroenterologist who knows about this, I am currently going through a lot of different doctors for EDS and POTS, I am having to see orthotics to have specially made shoes as i have functional hallux limitus, i have finger splints and wrist support splints to help with the dislocations and over hypermobility of them. I am due for testing to see what else is going on with my heart. my genetics appointment went well, I am finally on a roll with getting the help i need and deserve, after 7 years i have found doctors who are helping me and getting to the bottom of it all. I have been told I have to be monitored and screened for breast and ovarian cancer, I may be at risk of early age heart attacks and strokes, I have already had a heart attack at age 18. I have been told my EDS was there since birth, in fact it does run through my family and that mine has mutated into such a serious form that everything is malfunctioning. I also have endometriosis, just another illness of many which i have that has been caused from EDS. There is so much going on at the moment health wise and there is a lot to take in but I am staying positive and I am so glad I am being taken seriously for once in my life and treated well (by the consultants and specialists) I still suffer from bad attitude from many staff at my local hospital and very wrong treatment which has been horrendous. I am determined to get to the bottom of it all. Last year I was I got rushed to hospital with a twisted bowel and fluid on the stomach I had major open emergency surgery to save my life, I was on ICU and the next day they took me back to theater to open my stomach up to see if all was ok, they found my bowels had purforated and had died I had some bowels resected and I lost a lot of blood, the poisons from my bowels had collapsed 70% of my lungs and were only just working, I was in hospital for 7months and this is all down to the EDS. I am very lucky to be alive and here today. when they opened my stomach up they found hundreds and hundreds of adhesions all over my bowels they said its like i had had major surgery before hand, which i had not. I had to learn to walk again, I am a wheelchair user due to the muscles no longer working and my pots and eds is so bad i cannot walk far and have a lot of pain, sickness, dizziness, fainting and seizures. I am due to have intense physiotherapy for my spine, neck, all joints and to help my walking and stomach muscles. but I am not aloud to do any of this until I have been to see the specialist as my heart problem could be serious and doing any physio may put me at great risk. I am optomistic and I am so glad I have good friends around me and my family to support me with it all.
A lot of doctors..Do not know about POTS and it is under appreciated by them. this is why awareness and spreading the word...making people hear us and educating others is a necessity. there are only very few specialists out there and specialist clinics and unfortunately many POTS suffers cannot get the right help they so desperately need..me including. It should not be this way.. where a patient tells the doctor this is my condition and the doctor has no idea what it is and the patient has to sit there and explain them selves over and over again to EVERYONE they see. there is no cure for POTS but there are treatments out there available!...but many unfortunately do not receive the help, the simply get ignored and passed around like a ping pong ball, that leaves them feeling so frustrated and discouraged and helpless. I do hope that one day soon that the message gets out and doctors DO know what it is!...there are a lot of old fashioned doctors out there too that are still performing DANGEROUS test's on POTS patients!!... I have had it done to me and so have a lot of others I have seen. These dangerous tests include the doctor telling the patient to really hyperventilate and this of course makes then develop symptoms and pass out..that is what happened to me and we are told that we "need to see a psychiatrist" and that it is all "anxiety related".. it is old fashioned and very dangerous to do with a POTS patient as when you hyperventilate you are making the heart work faster and the faster it goes your blood pools ect.. and there isn't enough oxygen going to your brain hence the fainting!
People usually develop POTS through a number of different things..like Pregnancy a viral infection or severe shock. Developmental POTS affects adolescents. Often beginning around age 14 years, peaking at 16 years, then slowly fading in young adulthood. It can occur typically after the onset of puberty and sometimes following a period of rapid growth. most teens outgrow their POTS in their 20's but sadly the majority suffer with it for life.Other's who have EDS develop POTS unfortunately suffer with it for life and have the most severe form.. they are most likely to be the most debilitated from this and can often end up bed bound..
Please visit the page's in the menu bar above for EDS and useful links. Thankyou for taking the time to read my website it is very much appreciated.
Spread awareness. Without awareness there is no research. Without research there is no cure so please help spread the word.