It happens more than we think, having a family member go in for a routine procedure and finding out that they have an illness….but sometimes it takes a few months or even years for professionals to diagnose a disease or illness. This is often the case for families, that carry the VCP gene.
VCP is called Valosin Containing Protein (VCP or p97), which is a protein disorder that affects many body functions and systems. ‘VCP is a rare genetic disease, which can affect a patient’s muscles, bones and brain,” (CureVCP.com) This disease can run in families, with a 50/50 chance of children also having this disease.
VCP is a terrifying disease, because it can lead to so many or multiple very difficult disorders, some of which do not even have a cure. Some of the disorders are: Paget’s disease of bone, frontrotemperal dementia, inclusion body myopathy, amyotrophic lateral sclerosis (ALS), Parkinsonism, hereditary spastic paraplegia, Charcot-Marie-Tooth disease, cardiomyopathy, cataracts, and neuropathy. Although some of the disorders do have medicine to slow their progress, others do not have any path forward.
VCP disease is medically known as multisystem proteinopathy (MSP1), since it often affects so much of the body. This makes diagnosing a client with VCP just that much more complex and challenging to identify. In some cases, clients will have no idea that this disease runs in their family so when they start experiencing symptoms it is hard to identify and navigate getting the proper diagnosis, especially with a autosomal dominant, neuromuscular disease, such as this.
Symptoms may appear as muscle weakening occurs or when muscle responses do not continue with their normal functioning. Examples of VCP might be someone trying to eat out of their soup bowl but instead pushing the bowl away from their reach, accidently, on their own or someone trying to sit down but accidently clapping their hands. Most of the early symptoms may be laughed off as someone being “tired,” “forgetful,” or “aging,” but as symptoms continue to worsen, individuals may need family and/or caregiving support around the clock.
Most individuals, with VSP, have lived diverse lives and they can be of all or any nationalities and socioeconomic statuses. It is hard watching someone, who may have been a professor or doctor become someone, who needs help with bathing, getting dressed, and even to eat.
This illness is so important to know about because there is so little information on it, at all. This makes it so much more challenging, when someone starts experiencing symptoms because professionals like to compartmentalize it into more commonly-known diseases. Although VCP does not affect many, health care professionals will most likely come into contact with 1 or 2 VSP patients in their medical careers. With so many VCP clients losing their ability to talk, write, and sometimes even walk, it is just that much more important for us to be able to advocate for them. The most important thing we can do is spread information and empower individuals, who may be faced with learning whether or not they are a carrier of their parents’ same disease. The more we discuss it and the more we share, the more likely it is for medical professionals to consider doing more research to put a stop to VCP, or at least to slow it down. The best we can do is to continue fighting and helping each individual, that has, is facing, or will face, this challenging disease, use their abilities as lost as their possibly can.
www.curevcp.org
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