Raquel’s better quality of life

Hello, my name is Raquel and I’m 29 years old.

My journey begins as a child with multiple medical issues, which went undiagnosed until I was 23 years old.  I suffer from a condition called Ehlers- Danlos syndrome -type 3 Hypermobile (EDS); EDS affects the connective tissue in my body and weakens the collagen, causing my bones to dislocate, break and fracture easily. EDS causes the ligaments in my body to tear easily and weakens my lungs, as a result I suffer from severe asthma and allergies.

EDS has no cure and is a genetic condition.

In 2020 I was diagnosed with Gastrointestinal Motility Disorder which caused a significant amount of weight loss that is now becoming a detriment to my life and I fear the worst.

Due to the Covid-19, my appointments and treatments have been halted on the NHS and some treatments are no longer available under the NHS. The doctors were hoping to install a feeding tube into my stomach or small intestine to help provide enough nutrition to prevent me from losing any more weight and help with further treatment. However, the doctors cannot decide on the best method of treatment and my appointment’s keep being cancelled and delayed due to Covid-19.

I would like to raise funds to get private treatment and disability equipment. My illness has destroyed me and my family’s life as they see me in more pain every day. I just want a better quality of life with my family and children, and so I'm asking for help.

Back story

Growing up I suffered from reoccurring tuberculosis, chronic and recurring infections and chronic pain. I have fractured my arm, ankle, toes and fingers. I suffered from hearing issues which resulted in two surgeries for grommets. Additionally, I am dyslexic.
All the above are symptoms of EDS.

As a child, my mother would take me to the hospital because the pain would become unbearable, I would stay in hospital for a few days but the doctors couldn’t find anything wrong and concluded that it was just growing pains; on multiple occasions I had been prescribed paracetamol for the pain. I began to ignore my symptoms and suffer in silence, but everything got worse. I experienced sharp pains from the bottom of my back to my foot (sciatica), problems walking, digestive problem, weight loss and dislocated joints.

At 20 years old I became pregnant with my first child, soon after my son was born my health took a turn for the worse. I started noticing twitching in my hands which was later diagnosed to be Functional Neurological Disorder. I then started to suffer full body seizures which was diagnosed as Convulsion Disorder. The seizures left me bed bound for about 3 weeks and left my body weak and unresponsive. I was further diagnosed with TMJ which causes my jaw to subluxated an cause pain, Chiari malformation, Gastroesophageal Reflux Disease (GARD) and Chronic Hemiplegic migraines (stroke like migraines) which caused the left side of my body to shut down. The left-hand side of my body was so weak that I was unable to walk unassisted. I was unable to hold anything and broke more plates then I can count. I had to use a crutch to walk around the house and use a wheelchair whenever I left the house as my body could not cope with the strain. Over the following year I was admitted to the hospital several times as my health continued to deteriorate

At the age of 23 I was diagnosed with EDS type 3 (hypomobility) and Postural Hypotension which causes my blood pressure to change when I move. My body is unable to regulate my blood pressure which makes me feel nauseous and dizzy whenever I stand up of sit down. I also suffered from high ALT (liver condition) and Malnutrition which are also caused by EDS.

3 years ago, I started to get more digestive issues and was diagnosed with Global GI Dysmotility, a condition in which the muscles of the digestive system become impaired and changes in the speed, strength or coordination in the digestive organs. This condition effects most of the GI system from swallowing to emptying bowls. I have had trouble swallowing food and as it become more and more difficult, I was admitted to hospital at the end of 2019 as I was suffering from malnutrition. It’s a daily struggle to be able to eat enough to sustain my body as I’m unable to swallow or keep down much food. I have lost over 20kg in the last 11 months, and I now weigh only 39.5kg (6.22 stone).

This condition has turned my life upside down. I have two sons, 8 and 2 years old. I have tried to shield them from my pain and health issues, but they are now becoming aware of how ill their mother is and I’m afraid this will have a negative impact on them. I continue to rely on a crutch and wheelchair to get about. I am still unable to use my left side of my body fully and struggle to do the simplest of tasks. I have to rely on my family and friends to help me with day to day jobs such as collecting and dropping off my son to school. Cleaning and cooking are a daily struggle which comes with pain and frustration. Looking after a 2 year old in normal conditions is already a struggle, for me it is even more difficult, especially because I cant play with him like other mothers can.

Anxiety and depression have become a regular factor in my life. I just want to be able to go back to work and spend time with my children and loved ones, so I am doing this page because I need your help.

I am currently living with the following condition conditions; Asthma, Temporomandibular Disorder (TMD),Chronic Migraines, Sporadic Hemiplegic Migraines, Functional Neurological Disorder, Convulsion Disorder, Ehlers-Danlos Syndrome -type 3, Postural Hypotension, Eustachian Tube Dysfunction, Chiari Malfunction Type 1, Moderate Gastroesophageal Reflux Disease, Muscle Tension Dysphonia Type 3, Foot Drop, Dysphagia, Global Gi dysmotility (Slow Transit), Suspected POTS, Suspected Mast Cell Activation Disorder/Syndrome, Hypertensive & Lax Lower Esophageal Sphincter, White Matter Brain Abnormalities, Dysfunctional Breathing Patten.