Nov 11, 2019 Latest post:
Apr 21, 2021
Welcome to Chelsea Lawrence's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thanks for visiting.
In September 2019, Chelsea began to experience a range of odd physical and neurological symptoms — seizures, weakness, movement dysfunction, and sensory problems. More testing is being done, but was misdiagnosed. This sent her down a nine month journey to find a Doctor Who understood her and her Rare disorders.
As of May 2020 she had officially been confirmed with EDS which is Ehlers Danlos syndrome. Which is basically the connective tissue in your body is not holding your body together very well. This disorder has been with her her whole life and this is what is the underlying cause of everything. This disorder comes with a lot of other disorders and so she’s doing testing now to figure out what else is going on.
In June 2020 it was confirmed she has mast cell activation syndrome ( MCAS) . This is what was causing all the seizures in the beginning. This is a lot of treatment and currently we’re having a hard time managing the symptoms.
Mast cells are a normal part of our immune system. They live in the bone marrow, flow through our blood stream and are located in every organ and connective tissue of the body. When mast cells detect stress, injury, toxins or infection, they release specific chemicals (mediators) which trigger an immune response. Think of them as sentries or guards.
When mast cells perform properly, they help us. When mast cells are agitated or over-reactive, the immune system goes haywire and starts to attack the body, triggering auto-inflammatory processes.
There are two major forms of mast cell activation diseases Chelsea has
Mast cell activation syndromes (MCAS) — the inappropriate release of mast cell mediators including: histamine, interleukins, prostaglandins, cytokines, chemokines, and heparin (There are more than 200 chemical mediators associated with mast cells.)
Also June 2020 she was diagnosed with Craniocervical cervical instability (CCI).
Craniocervical instability is a medical condition where there is excessive laxity of the ligaments at the atlanto-occipital joint and the atlanto-axial joint, between the skull and the top two vertebrae (C1 and C2).This results in excessive movement of the vertebrae which can cause neuronal injury and compression of nearby structures including the spinal cord, vertebral artery or vagus nerve, causing a constellation of symptoms. It is frequently co-morbid with atlanto-axial instability, Chiari malformation and tethered cord syndrome.
It is more common in people with a connective tissue disease, notably Ehlers-Danlos Syndrome,osteogenesis imperfecta and rheumatoid arthritis.It is often brought on by a trauma, frequently whiplash. For Chelsea it was such seizures that caused the CCI. It happened on Thanksgiving.
As of October 2020 Chelsea was diagnosed with Neurocardiogenic Syncope Dysautonomia.
Neurocardiogenic Syncope (NCS) - NCS is the most common form of dysautonomia, NCS impacts tens of millions of individuals worldwide. Many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. However, some individuals have severe NCS which results in fainting several times per day, which can lead to falls, broken bones and sometimes traumatic brain injury. Individuals with moderate to severe NCS have difficulty engaging in work, school and social activities due to the frequent fainting attacks
In November 2020 Chelsea was diagnosed with the beginning stages of degenerative arthritis in her hands and knees. Which is also connected to her Ehlers-Danlos syndrome. Chelsea has degenerative disc disease which is also known as osteoarthritis and that is in her spine. This is all interconnected with degenerative things. This was finally get progressively worse because of the laxity in her joints and we will be talking further with her new rheumatologist to prevent things from getting worse hopefully.
Now we are having major problems with stiff attacks. Chelsea has been through a multitude of neurologists who believe it could be stiff person syndrome. This is a progressive disorder and can take 6.5 years to diagnose. Neurologist will only see this once in their career and it is very hard to diagnose. She has two movement specialists set up in December and one in February.
There are a multitude of other conditions going onto the side of these conditions but these are the primary conditions that are complicating things.
Having Ehlers-Danlos syndrome comes with a lot of complicated issues and a lot of health issues.