Hello, everyone.

My name is Vee, I am 33 years old and I have a very rare autoimmune disease. It still has not been officially diagnosed but I have a combination of symptoms of dermatomyositis, rheumatoid arthritis and antisynthetase syndrome. As a result, I have extreme muscle weakness all over my body, very painful and inflamed joints, difficulty in swallowing, tightness of chest, struggle in breathing and skin rashes on my hands and fingers which makes them very sensitive and painful to touch. As my wife is typing this post to my dictation (I cannot type as it is too painful), I am still battling with this disease on a daily basis. Unfortunately, I can no longer work and this is my cry for help to be able to afford to pay for the rent, for food and for my medical treatment. 

I developed this disease in November 2019 and it was very sudden as I was completely healthy. Before this happened, I loved to go out and do regular things that people my age do. I did high intensity exercise every day, practised intermittent fasting and was very conscious about my health. At the same time, I was also working at least 60 hrs per week so that I could save money to go and visit my family in the Philippines after 11 years. My parents are getting old and I really would love to see them at least one more time before it’s too late.

Going back to my illness, it was the 2nd week of November when I first noticed that my gums were bleeding and were extremely sensitive to both cold and hot. It was very difficult to eat or drink because it was just too painful. I saw a dentist who prescribed a course of antibiotics for 3 days. I took them but a few days after, I noticed there was an itchy rash on my hands. I occasionally experienced this before in winter so did not pay much attention to it, thinking that it would go away after a couple of days. However, this time, it didn’t. In addition to the rash, I started feeling muscle weakness when I was doing my exercise. I stopped exercising for a few days but the pain got worse. At the end of November, I couldn't move my body and was crying because of the pain. My lips started swelling, I could hardly breathe or swallow and both my feet and hands were painful and swollen as well. This is when I realised that something was definitely wrong.

I went to the nearest A&E and after seeing several doctors and spending 13 hours there, they still could not figure out what was wrong with me. I returned again the following morning and was given 3 bags of intravenous fluids (my blood pressure was too low) and steroids to help me manage my pain and weakness. I was discharged home but a few days later the pain became unbearable. I woke my wife up in the middle of the night and asked her to call 999. I could not breathe or feel my hands and feet. I was taken to A&E again and was then transferred to a ward for a week, where I stayed as an inpatient. I was given more steroids which made me feel a bit better and was then discharged on 13 December, just a few days before my birthday.

Fast forward to this day, unfortunately I am still experiencing extreme pain on a daily basis. The NHS consultant is still investigating my blood test results and I still have not been formally diagnosed. My wife has been off work since I have been taken to the hospital and has been looking after me every single day because I cannot be left on my own and need constant around-the-clock care. I need help even with very simple tasks such as getting dressed and washing my hair. The pain is so bad that sometimes I can’t even hold a glass of water.

All the financial responsibilities are now on my wife’s shoulders. Her standard salary has been just enough to cover our rent, bills and food. However, as she has been off work for 3 months, her salary has been reduced by 50% (company policy) and now we don’t have enough for the rent. In another 3 months, her salary will be reduced to 0% unless she goes back to work. Unfortunately, there is nobody else but my wife that I can ask for help. My entire family are in the Philippines and are too poor to afford a visa and plane tickets to come to UK. My wife’s parents spend a lot of time outside the UK so cannot look after me either. I have applied for financial help from the government as well but have been refused because they believe my wife’s salary is enough, so we are really out of options.

I am asking for your help so that I could see private specialists who can hopefully help to diagnose my condition and find the correct treatment. My recent blood test results showed that my liver is starting to fail as well, and with the lack of proper treatment from the NHS it worries me that I may not make it long term. 

The funds I am hoping to raise will go towards paying for private consultations and treatment, to support me with rent and bills as I am no longer able to work, and the airfare to the Philippines. I'm hoping that whatever happens to me in the future, at least I get to see my parents one more time. 

After this experience and once I recover, my dream is to become a nutritional therapist using functional medicine (holistic way of treating chronic diseases). After my experience of the NHS, I truly believe there is a lack of health professionals in this field, so hopefully if there are any extra funds left, I would use every last penny towards my tuition fees.

Thank you so much for taking the time to read this, please share this post with your friends and loved ones so they can also learn from my experience, and any donation big or small will help us greatly. Wishing you all good health and happiness in everything that you do. 

Love and peace to everyone,
Vee
xx

PS if you prefer to donate via PayyPaL* instead (family and friends option), my email address is [email redacted]