Proper and adequate nutrition is essential for successful management of cystic fibrosis (CF) .
The energy needs of children and adults with CF are substantially higher than those of unaffected people because of poor absorption of
nutrients in the digestive tract of CF sufferers and their compromised lung function. Malnutrition results in accelerated progression
of the disease, increased susceptibility to infections, and growth retardation in children. Often specially designed high-calorie,
easy-to-digest nutritional supplements are needed to achieve steady weight gain in children and maintenance of healthy weight in
adults with CF.
Scandishake (© Axcan Pharma) is a high-calorie supplement designed for patients who have difficulty gaining
and maintaining weight, and has proven particularly helpful for people suffering from cystic fibrosis. For example, Artem Isaev from Saratov lost 7 kg as a result
of an acute attack of illness and could not regain that weight. Two cans of Scandishake helped him regain 1 kg. Anna Kolosova from Tomsk regained already 4 kg
having used four cans. Dasha Rusakova from Omsk gained 1.7 kg after using only three cans. There are many more such examples. Scandishake is not available in Russia or most other
former Soviet countries, but, according to doctors and patients' families, it is much more effective than any other supplement.
Here is what Anna Voronkova, a doctor from the Medical Genetics ward of the Republican Children’s Clinical Hospital, writes about “Scandishake:
“This nutrition is recommended for all children with cystic fibrosis who gain weight very slowly and suffer from frequent acute attacks of the disease, intoxication,
hyperthermia, respiratory distress, etc. One bag of the supplement ensures the daily amount of extra calories required for any patient with cystic fibrosis. It is very useful
for kids with low appetite, because it is hard for them to get extra calories by eating larger amounts of usual food. Kids like the mix and drink it gladly! The results are not
immediate. For children who are severely underweight and retarded in physical growth (such as one of my patients, a 12-year-old boy who looks like a 7-year-old) a month-long or
longer course is required in order to gain substantial amount of weight and grow in height. In some cases it is desirable to prescribe a daily intake of the mix for a longer
period. In other words, I wouldn’t say that each and every CF patient requires it (there are children who are rarely sick and gain weight quite well), however, most children
do need the supplement, especially in cases of a flare-up of a disease. In many countries this supplement is listed among the necessary medications provided by the state to
every CF patient, whether they are a child or an adult.”
Currently, we help at least 30 kids and young adults receive Scandishake on a regular basis, which means purchasing and delivering approximately 90 cans each month. We are unable
to continue with this program without your help.
How you can help:
1. You can buy Scandishake mix and deliver it to Russia. The cheapest way is to order at the manufacturer’s
web-site. Best option is Vanilla Sweetened with Aspartame, designed for diabetes patients,
because many children with CF are prone to diabetes and various sorts of allergies. Vanilla flavor is least allergenic. 2. Volunteers in Russia, who help CF patients, will contact you and
deliver the mix to the patients, or you can deliver it yourself. Contact the coordinator, Anna Egorova at anna.egorova@gmail.com.
2. You can even “adopt” a child or a grown-up with CF and provide them with Scandishake as they require it. That would cost about $50-70 per month. We will provide you with
contacts of the patient.
3. If you wish to help but you don’t travel to Russia, you can order Scandishake for Anna Egorova, who is constantly searching for people who travel to Moscow or other locations
where patients we are sponsoring live, and can take the mix with them. She arrange for the Scandishake your purchase to be delivered as well. Contact her at anna.egorova@gmail.com
4. If you cannot buy Scandishake but you travel to Russia, Ukraine or Kazakhstan, please write to us and we will order the amount you can take with you right to your address.
Likewise, if you know someone travelling to those places who might be willing to help, please share this information with them.
Pulse oximeter is a small device that allows non-invasive monitoring of saturation of patient's blood with oxygen. For most of people suffering from
cystic fibrosis, hypoxia (insufficient oxygen supply) due to lung infections and deteriorating condition of the lungs is one of the most serious problems,
and monitoring oxygen saturation is very important. Many of them live at home and rely on oxygen therapy. In this case, continuous monitoring of oxygen saturation is
critical for assessing the effectiveness of treatment. Pulse oximeters are also always needed in hospitals where children and adults with cystic fibrosis are treated.
In many cases, hospital budget does not include pulse oximeters, and doctors have to purchase them with their personal funds.
The two models that are suitable are Nonin 8500 and
Nonin 9590. The first model combined with SM or SS size sensors
works well for children under 5 years, and the second one is designed for patients over 5 year old. They are sold in Russia but cost almost twice as much as they do in the US,
therefore we prefer to buy them in the US and ship to patients who need them.
If you want to purchase a pulse oximeter for a child or a young adult who needs it, please, contact us at anna.egorova@gmail.com or info@helpjournal.org. We have a list of
young patients who are waiting for a pulse oximeter. If you would like to make a donation to this program, please do so, and note in the comment section that your donation is for
the pulse oximeter. Thank you for your help!
