Dear Family & Friends,
Doctors who specialize in Cushing’s Syndrome and its related illnesses realize the medical aspect and know the damaging effects that Cushing’s has on the body. Family and friends see their loved one suffering and know they are hurting physically and often times mentally and emotionally. However, understanding the debilitation of Cushing’s and how it can affect every aspect of a person’s life is “only truly realized by those who have experienced the syndrome.”
The CUSH organization, a non-profit organization ran by volunteers who have Cushing’s or had Cushing’s is furnishing this letter for patients to provide to their family and friends in hopes of providing a better understanding of the syndrome.
We’re sorry to hear that your family member or friend has Cushing’s Syndrome. . Having Cushing’s is like a war going on inside of the body. The person may feel better at times then at other times. It’s common for a Cushing’s patient to have burst of energy and then all of the sudden they become lethargic and don’t feel like moving a muscle. There are many symptoms that are associated with Cushing’s Weight gain, Fatigue, Muscle weakness, Shortness of breath, Feeling achy all over, Headaches, Blurred vision, Mood swings, High blood pressure, Diabetes, Edema, etc.
Cushing’s patients are in a sense like snowflakes….we all have the same composition, “an illness that is caused by excessive cortisol” However, no two Cushing’s patients will be exactly the same. Not everyone who has Cushing’s will experience the same symptoms, treatment, or recovery.
Cushing’s causes the physical appearance to take on a different look due to weight gain, hair loss, changes in complexion, etc. This can be very disturbing when looking in the mirror. This can cause the Cushing’s patient to withdraw from family and friends. Cushing’s can be a very lonely illness. Cushing’s patients often feel alone like everyone is against them and that no one understands.
Cushing’s is not a prejudice disease, it can affect, young, old, white, black or other ethnic background, male and female.
Cushing’s patients need to be able to take one day at time and learn to listen to their bodies. There will most likely be times when naps are needed during the day and often times may not be able to sleep at night. Your loved one doesn’t expect you to understand Cushing’s syndrome to the full extent. They do need you to be there for them and try to understand to the best of your ability what they feel and not give up on them.
Often times a Cushing’s patient may tend to be moody and say things that they don’t mean. If this should happen with your loved one try not to take it personally and know that it’s most likely caused by the elevated cortisol and disturbances in other hormone levels caused by the Cushing’s and not from the heart or true feelings of your loved one.
It can be very depressing and frustrating having so many limitations and experience things in life being taken from you. Cushing’s patients are sick, not lazy, not hypochondriacs. If a Cushing’s patient says they don’t feel like doing something or they express how bad they feel let them know that you believe them. One of the most frustrating things to someone who is sick is to have those you love not believe you or support you.
Testing procedures can be lengthy and this can become frustrating for the patient and family. Don’t look to far ahead just take one day at a time and deal with the situation that is at hand at the present time.
After a diagnosis is made then it’s time for treatment. Surgery is usually the best treatment option for Cushing’s that is caused by tumors.
Once the diagnosis has been made and treatment has been given then it’s time for the recovery process. Not all patients who have surgery are cured and they have to make a choice along with the advice of their doctor as to what their next treatment option will be.
The recovery from the surgery itself is like any other surgery and will take a few weeks to recover. The recovery process obtained from getting a cure from Cushing’s is quiet different from other corrective surgeries. A Cushing’s patients body has been exposed to excess cortisol and has become accustomed it. When the tumor is removed that has been responsible for the excessive cortisol and the body is no longer getting it this causes the body to have withdrawal symptoms. Withdrawal can be very hard causing an array of symptoms muscle aches, weakness, bone and joint pain, emotional disturbances etc. (Please read the “Adrenal Crisis” publication)
Thank you for reading this and we hope it will help you to understand a little more about Cushing’s and the dibilating affect it can have on a person. Thank you for being there and supporting your loved one during this time in their life. We realize that when a family member has Cushing’s it not only affects the individual but other family members and those around them as well. Showing your love and support will encourage a speedy recovery for your loved one.
Cushing’s Understanding Support & Help Org. We're a non-profit organization. We're not a medical authority, therefore we do not claim to have medical knowledge. Always consult your doctor or healthcare provider with any medical questions that you have concerning test, treatment, advice, etc. This information is provided as a service to Cushing’s patient's their family and friends and should never be considered as medical advice. It can be printed from this site for personal use only. The information is not to be edited. Using the information for any other reason than mentioned above requires prior written authorization from CUSH.
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