FATIGUE IN BONE MARROW FAILURE PATIENTS

(This article has been reprinted with permission from the Aplastic Anemia & Myeldysplastic Syndrome International Foundation. Although it discusses fatigue in relation to AA and MDS, many bone marrow failure syndromes can relate to all that is written here and thus, SDSF has determined that this is an appropriate article for our community)

Feeling tired? Don't have that same get up and go? You are not alone. Most patients who are diagnosed with a bone marrow failure disease say they experience fatigue. In fact, one recent study reported that more than 90 percent of patients with MDS experience excessive fatigue.

The fatigue experienced by patients often goes well beyond just being tired. It is described by one expert as a persistent sense of physical, emotional, and/or cognitive tiredness, or exhaustion that is not related to recent activity and that interferes with the ability to function normally.

Unfortunately, fatigue in patients with bone marrow failure diseases and cancer often goes unreported. Several fears and misconceptions contribute to this lack of reporting, including the following:

• Hesitancy to report fatigue for fear of not receiving maximum treatment dosages
• Belief that fatigue is an expected symptom that is untreatable and that you should cope with it
• Concern that you will be perceived as a "complainer"
• Fear that it is a sign of recurrent or advancing disease

Doctors don't know exactly what causes excessive fatigue in patients, but they do have some ideas. Some think that it is caused by the abnormal secretion of substances that impair metabolism or affect normal muscle function. Other causes may include:

• Chemotherapy and other medications and treatments
• Sleep disturbances
• Pain
• Psychological factors such as depression or anxiety
• Poor or insufficient nutrition (nutritional needs can change depending on the disease and current treatments)
• Hormonal imbalances
• Other illnesses such as uncontrolled diabetes

Fatigue is a real condition for patients with bone marrow failure diseases; patients need support and help. There are interventions that can help improve quality of life and reduce fatigue. Here are a few things to consider:

• Be proactive. Tell your doctor about your fatigue and request an evaluation.
• If you are not sleeping well, ask your doctor about sleep therapy.

• Conserve your energy. Set priorities, pace yourself, delegate tasks to others, and schedule activities at times of the day when you have the most energy.
• Consider starting an exercise program. There is a strong body of research showing that, at least for cancer patients, moderate regular exercise decreases fatigue, emotional distress and sleep disturbances, and increases functional quality of life. Never start an exercise program without checking with your doctor first.
• If you have other coexisting health conditions or are suffering from daily pain, make sure you see a doctor and mange these effectively.
• Have an exit plan or backup plan when you attend an activity or gathering that will allow you to leave easily and quickly if you become too tired.
• Consider medications. Certain stimulants, antidepressants, and steroids can help. Talk to your doctor about what may be right for you.

It is important to consult with your treating physician before beginning an exercise program, changing your diet, or taking any over-the-counter medications or dietary supplement.

For more information on managing fatigue, view their  Webinar, "Managing fatigue in bone marrow failure diseases"

Think summer camp is just for young kids? Well you might just want to re-think that!

 This past summer I had the privilege of attending SDS week at Camp Sunshine in Maine.  It was my first time attending and I wasn't sure what to expect. I knew that there would be lots of activities for the younger kids, but I figured at age 23 I would just take advantage of the medical sessions and enjoy the outdoors. I quickly found that I was under-estimating the staff and vision of Camp Sunshine. As soon as we arrived there was a welcoming session that let me meet the other young adults at camp - and to my surprise there were many! Not only were we welcomed into the medical sessions to learn about the research and advances in treatment, but there were special sessions set up to let us mentor the younger children. In addition, the staff went out of their way to ensure that we were included in the challenge activities as well.           

For me personally, the week had two definite highpoints. The first was simply being able to meet other young adults my age with SDS and having someone to talk to about living with the different aspects of the disease. It was definitely eye-opening hearing the similarities and differences between our experiences from disease symptoms to bone marrow biopsies.

It was also a great opportunity to be able to exchange ideas about how we will manage our SDS issues now that we are older and in college or out on our own. The second highpoint was the opportunity to share our experiences with the younger children and to help them see that SDS doesn't define who they are, it is simply just one piece of their whole being.

All in all, camp was an amazing experience that I am so glad that I was able to take advantage of, an experience that left me with wonderful memories and many new friends. If you have an SDSer, young or old, that hasn't gone to camp - start planning now to attend the next SDS week to be held in the summer of 2012!

OTHER IDEAS

Alumni Reunions - sell SDSF Rubber or Crystal bracelets

Art Exhibit - of locals or kids - charge admission/sell tickets

Auction/Silent Auction -get donated items from friends, family and local businesses.

Bake Sale

Balloon Bouquets - buy wholesale, sell retail

Bazaar And Fair - charge for admission and food and drink

Block Party - sell rubber and crystal bracelets

Box Lunches -make them yourself and sell at retail

Breakfasts (Pancake,International Food, etc) - sell admissions or single meal

Car Wash - get volunteer students, ask fire dept for access to water

Celebrity Lunch Or Dinner -charge admission

Christmas Craft Sale

Christmas Wish Tree

Craft fair - charge admission and ask each vendor to donate a portion of their proceeds

College Final Exam Survival Kits -sell to friends/family

Community Festival Consignment Items Sale

Cookoff Contests (Dad& Daughter, etc.) - charge entry fee

Easter Gift Baskets for sale

Fashion Show Luncheon

Father/Daughter Dance -

Flower Sale -- Mother's Day

Game Contest Marathon

Guess Beans In Jar Count

Hobby Fair

Home Tours - charge admission

International Foods Sampling -charge admission

Outdoor Concert

Poker Game- charge entry fee and re-supply of chips. Winner can donate winnings to SDSF

Pet Shows - charge admission and get donated prizes

Rummage/Garage sale

Supper With Ticket Sale (Chili, Hamburger,Spaghetti, Pizza, Barbecue, etc.)

Ticket Sales Of Door Prizes At Special Events

Tournaments/Events (golf, walk/run event,tennis, softball, chess, etc.)-see separate article

Used Book Sale

Wine And Cheese Tasting's - charge admission and donate portion of sales of wine to SDSF

Most of the events that need to charge admission/sell tickets can be priced by finding out what other charities charge for fundraising events in your area.