Frequently Asked Questions
1. What type of doctors will I need?
Cryoglobulinemia affects your entire body. Most cryoglobulinemics will have a team of doctors including specialists such as dermatologists, rheumatologists, hematologists and oncologists. Typically an internal medicine doctor or your family physician helps to coordinate the team unless they turn it over to one of the above listed specialists. As symptoms affect specific parts of your body, you will be referred to a specialist dealing with that particular field of study. Some of those doctors may be a cardiologist, ophthalmologist, neurologist, and nephrologist to name a few.
2. Will I end up in a wheelchair?
Each patient varies greatly in how and where the disease impacts them. The majority of cryoglobulinemia patients will not be in a wheelchair full time.
However there are some who will use one at least temporarily during a flare up of symptoms, due to the extreme fatigue the disease can cause and a few that will remain in one either from cryoglobulinemia or the damage done by another disease that is typically associated with cryoglobulinemia. At this time there is no cure. There is hope for those with certain underlying diseases that cryoglobulinemia is associated with, such as Hepatitis C and certain cancers because when the treatment for these conditions is accomplished, it can put that condition into remission and it can sometimes do the same for the cryoglobulinemia. For those with other related diseases and conditions, partial remissions can occur with proper treatment and prevention.
3. What is Raynaud's phenomenon? In Raynaud's, the flow of blood to the hands and feet can drop, causing pain and the color to become pale, then bluish or red. Cold temperatures or stress can set off an episode. Many people with cryoglobulinemia has Raynaud's and that is why we say stress and cold temperatures can cause a cryo flare up. these two conditions make dealing with and overcoming cryo difficult.
4. Do I have to move someplace warm?
No. Many cryoglobulinemia patients live in colder climates. This is a personal decision each patient has to make. Those who live in colder climates have to take many precautions; however, those who live in hotter climates tend to struggle with air conditioners and drastic temperature changes from going indoors vs. outdoors. There is no perfect answer, only personal preference, lifestyle choices and prevention. Florida is often thought to be a good place to live. However the air conditioning and the damp cold in the winter months seems to soak into bones causing bone, joint and various pains and flare ups. Each patient must figure out what will work for them. The support group is helpful in sharing ideas.
5. Is cryoglobulinemia hereditary?
There has been no research to confirm that cryoglobulinemia is hereditary. There are certain underlying cryoglobulinemia related diseases that are known to have hereditary factors. Now that CVO has set up an international support group we are realizing that the rare cancer multiple myeloma is a common condition in patients or direct relatives. Please discuss those with your doctor who can inform you if you have any conditions that may be hereditary.
6. Can I claim disability?
Cryoglobulinemia is not a diagnosis that allows for an automatic approval of disability payment. If you feel you are unable to perform your employment duties due to your cryoglobulinemia you may wish to talk with your doctor and see if they support you filing a disability claim. This can sometimes be a long and difficult process however the more information your doctor can provide, the more help it will be to your case. Please contact your local Social Security office for more information. During winter months you may want to ask your doctor for a disabled parking tag. This will allow you to park as close as possible to the store doors to cut down on exposure to blustery weather that can cause flare ups.
7. Will cryoglobulinemia lead to other diseases?
Although people with cryoglobulinemia tend to have other conditions such a fibromyalgia, raynaud's, etc., it is not known if it causes other diseases or could make you more susceptible. More research, survey's and communication is needed in this area. Cryoglobulinemia can however lead to damage of different areas of the body, causing new conditions such as ulcerated sores becoming gangrene leading to amputation. And cryoglobulinemia can cause inflammation of the kidneys called nephritis.
8. Is cryoglobulinemia a terminal disease?
Cryoglobulinemia can indeed cause complications such as kidney failure or a stroke that can lead to death. However this is not a common occurrence. Most patients once they get a proper diagnosis and learn how to live with cryo and lead full lives with proper treatment and prevention.
9. Why should I join the CVO team?
Some people when diagnosed with cryo will isolate and go through stages of grief and depression. It's helpful to know you are not alone. The CVO family can help you grow through the challenges, learn ways to overcome the disease and champion you through the tough days. We offer many ways to stay connected.
10. My family doesn't understand. They think I look fine so why am I using a wheelchair/walker, so fatigued and unable to live life as I once could. What should I do to help them understand? How do I ask for help?
It can be very difficult for families to accept your diagnosis. Give them time while you connect them to the CVO family and this website full of helpful information that can answer many of their questions and clear up the confusion. This website was developed to support you and those who love you (your family, friends, medical practitioners and caretakers)! Cryo is a whole new world with many issues that need to be considered. You may have cryo but it doesn't have to have you! Fight back with knowledge, prevention and teamwork. Share the Mystery Diagnosis TV show that is available on You Tube. They did a great job of introducing cryo. Sharing the video, this website and it's stories on social sites and in emails can help those close to you increase awareness and understanding of this complicated and painful disease.
Don't give up. Stay connected. You are not alone.