How to live with VCP Disease

Hi I am a 55-year-old man in Tennessee and I was born into a family that has what in the olden days they would call a curse. This disease actually has multiple diagnosis which was not cleared up till the late 90’s early 2000’s when a mutation of the vasolin containing protein gene was discovered thru research by several doctors thru research covered by the Muscular Dystrophy Association. Which now we know the disease as Inclusion Body Myopathy, Pagents Bone Disease, With Frontotemporal dementia (IBMPFD).

This disease is inherited and generally affects 50% of your children and rarely skips a generation, one of the strange facts is that you may have one, two, or all three of the diseases, that are caused by the VCP gene, which is why it is also referred to as the V.C.P. disease. This disease Is very rare, which is why very few pharmaceutical companies will run trails because of low profit. Luckily for us patients, the MDA does pay to run trails.

I was diagnosed with Muscular dystrophy in 2011 but they did get the type of muscular dystrophy wrong on the diagnosis, which happens to lots of patients due to symptoms changing in a years time, or doctor’s changing in the MDA clinics causes these misdiagnosis of your disease. Luckily my family had participated in a family study of genetic testing so my diagnosis was found to be IBMPFD by the genetic code.

The first step was it had made it hard to climb stairs walk long ways without sitting down to rest and the inability to get up from the floor without help or something to crawl up to and put my upper body on and push up. I also had to use cane to walk to help with balance. I was still working but had to file for disability and request reducing hours instead I got laid off and could not get someone else to hire me once I was put on a walker for more stability. It took three years to get approval for disability, so would recommend to anyone with a family history of this or any hereditary disease that you purchase both short and long term disability insurance coverage . This way you are not without any money while waiting on approval.

The following chart is recommendations of things to do to avoid a lot of the extra medical problems I have had cause I made mistakes and had no guides to follow or did not follow all instructions.

1. Quit smoking right away. I did not and kept getting pneumonia and with weakened diaphragm you will not be able to clear your lungs and will end up with a treck to be suctioned through and possibly end up on a ventilator.

2. Make sure that you work your leg and arm muscles out and take some speech therapy to insure that you maintain the ability to swallow and the ability to talk.

3. Set up appointments with neurologist, and another specialist that your doctor recommends.

4. Visit VCP website and fill out all the family history data.

5. Visit VCP website and join studies to share your data. Also register with NORD agency

6. Record your loss of movement and pain increase.

7. If your bones start to hurt in joints and your long bones like legs and back, if your hearing starts going in and out see a doctor about Pagent's bone disease.

8. The main important thing to do is keep a positive attitude, keep your hopes up for a treatment or a cure find hobbies other ways to keep you busy with your mind and your hands moving so they don’t claw up.

Thanks for reading my story hope this helps someone deal with their family curse