August 2009

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More than Medication

Perhaps you have seen the television commercial where a teenaged boy, after spray painting walls at night comes home just before the sun comes up causing his mother to give him a “where did I go wrong” look as he walks past toward his little sister’s room. His little sister is obviously very ill, her room containing a hospital bed and medical equipment. The boy opens the curtains as the sun rises on three story walls painted with colourful flowers and the words “Be Brave.” The little sister lifts herself onto her elbows and smiles, with her mother in the doorway weeping.

The commercial is produced by Pfizer and is part of their “More than Medication” Program. We should tell you at the outset that Alpha-1 Canada has never received funding or support of any kind from Pfizer. We just thought that the message this program sends is worth repeating, especially since it is a message we have been repeating for so long.

You can view the commercial by clicking here.

Pfizer has been in the pharmaceutical business since 1849 and according to their website they “believe to be truly healthy, it takes more than medications. That’s why Pfizer is also committed to promoting the many small things we can do to stay healthy.”

 

The H1N1 Flu and Alpha-1 Most of the world is concerned about the H1N1 flu virus. People with respiratory diseases like Alpha-1 are especially concerned. The news media is bursting with information on the H1N1 flu. We have added a new page to our website that contains information about H1N1 that is specifically related to Alpha-1. The following is our first entry on the new H1N1 Updates page. The Alpha-1 Foundation in the US just published the first information we have seen specifically abou H1N1 and Alpha-1. The following is taken from the foundation's website. "Flu is primarily a respiratory infection and respiratory infections can be more severe in people who have the types of medical conditions that those with Alpha-1 may have. The US Centrers for Disease Control (CDC) recommends use of the antiviral drug Tamiflu (oseltamivir) and Relenza (zanamivir) to treat infection with the H1N1 virus or to prevent infection if you are exposed to someone with the flu.   However, it is recommended that anyone with respiratory problems should avoid using Relenza.   A vaccine (flu shot) to protect against the H1N1 virus is expected to be available by the second half of October. This vaccine will need to be given twice, with the second shot administered at least 21 days after the first.   In addition, a vaccine to protect against the usual seasonal flu (single injection) will be available in September. It is recommended that anyone with lung problems receive all three of these injections this fall."   Read the Alpha-1 Foundation's complete flu advisory.

Part of the Pfizer program includes a newsletter which you can subscribe to on their website. One of their recent articles Alpha’s will find useful is “The inside story on air quality.” The article outlines seven simple ways to improve your home’s air quality. It is good advice for anyone, but especially Alphas. Whether you are lung affected or liver affected avoiding toxins is important since most of the toxins we take in daily make their way to and, hopefully, through the liver.

We would like to ask all of our readers to share with us some of the things you do, in addition to taking your medication, that helps you. We will compile your submissions and share them with everyone in an upcoming newsletter.

Friend needs our help

One of our Canadian Alphas needs our help. She has been on the waiting list for a lung transplant now for longer than anyone else – two years.

“It’s a rare match,” she says, she has O negative blood as well as certain anti bodies in her blood, making her difficult to match to a donor. She was diagnosed three years ago, after initially being told she had asthma. Finally, she had a different diagnosis, and had to go through the arduous process of getting on the transplant list.

During her two year wait the financial burden has escalated. In addition, should she get her lungs, she will have to go through a difficult, expensive and long recovery period near the hospital, which is not close to her home. “Financially, it’s pretty tough on us,” she said.

She and her family have received a lot of help from her local community. Home Hardware, for example, has done popcorn drives, and other businesses have made donations. A fundraiser was held in June for her recovery.

There is also a special bank account for donations at a local bank, however, if you would like to help, get in touch with us and we will make sure your donation gets to her.

In the meantime, our friend maintains a positive attitude.

“You have to have a good outlook,” she said. “You can’t let something beat you.”

A Prescription for Exercise – Part 2
by Gary Murphy

Hello again. How did everyone make out last month on their 20 minute commitment to themselves? I made my commitments to you and myself. I hope that all of you were able to meet yours.

This month I am going to start with stretching. Why should we stretch?

Repetitive motion injuries are common in running. If you do find yourself suffering through one make sure that you see a physician who specializes in sports injuries or a physiotherapist. They are so commonplace primarily because runners do not like to stretch. You can either stretch and prevent the injuries or spend your time in physio fixing them. Stretching is much easier.

There are five predominant injuries in running. Stretching and reasonable increases in exercise intensity will prevent them all. If you are a walker you still need to stretch. The heavier you are or the faster you increase distance or speed, the greater the likelihood of you developing a repetitive motion injury.

The Big Five are:

1. Iliotibial (IT) Band pain. This is an ache or pain on the outside of the upper leg between the knee and the hip. It will start at some point in your run but the pain will stop when you do. To ease this pain if you haven’t stretched preventatively, do an IT Stretch. It is much easier to do these now when you are not injured and consider them a 30 second investment.
2. Plantar Fasciitis. This is a pain in the underside of the foot anywhere from the heel to the base of the large toe. You’ll know you have this if you have pain in the underside of the foot when you first get out of bed in the morning. (Assuming you don’t have children and it is not a Lego or Hot Wheels pain.) To stretch the plantar facia put your foot on a golf ball and roll the ball from the base of your big toe to your heel and back to the base of your second toe and then repeat.
3. Shin splints. This is an aching or throbbing in your shins, one or both at the start of a run. It may or may not ease off during the run. To help this you should back off on your running / walking distances and ice the area.
4. Runners Knee (Chondromalacia). This is pain beneath or beside the kneecap. Stop running and ice the area 2 or 3 times a day. Stretch your quadriceps and hamstrings.
5. Achilles Tendinitis. This is a dull or sharp pain usually near the heel or back of the leg below the calf. To treat you will have to stop running. Ice the area for 15 to 20 minutes several times a day. Self massage. Stretch calf muscles and Achilles tendon to prevent this from reoccurring.

All of these injuries are painful and nagging. It is much easier to stretch prior and post run and never having to experience any of these. Remember that tight muscles cannot move properly or through their full range of motion. Don’t stretch the muscle to the point of pain. Stretch slowly and gradually holding the position for 30 seconds and then releasing. Complete 2 to 3 repetitions.

Stretches

Calf Stretch
• Stand with your feet pointed forward
• Keep your heels down and back leg straight
• Slowly bend the front leg until you feel a gentle upper calf stretch in the back leg.

Heel Stretch
• Stand with your feet pointed forward and heels down.
• Slowly bend the back leg until you feel a lower calf or heel stretch along that leg.

Standing Quad Stretch
• Stand with one hand on an object to balance.
• Bend the knee you want to stretch until you can hold onto the ankle with your hand.
• Gently pull up and back until you feel a stretch in the front of the thigh.

Hamstring Stretch
• Sit with one leg straight and the other leg bent out to the side.
• Slowly lean forward with your chest until you feel a stretch along the back of your thigh.
• Keep your back straight.

Standing IT Band
• Stand next to the wall with the leg you want to stretch closest to the wall and arm straight out.
• Cross the outside leg over and lean your hip into the wall keeping your arm straight.

Butterfly (inner thigh)
• Sit with your back straight and knees bent.
• Place the soles of your feet together.
• Drop your knees toward the floor, until you feel a stretch along the inside of your thighs.

Knees to Chest (lower back)
• Lay on your back.
• Bend both knees and bring them up towards your chest.
• With your hands around your thighs, gently pull your knees up further.

If you started last month with me and were able to commit and complete your walks, this month we are going to start to run. If this is your first time reading check out last month’s article and start your walk program.

Words to the Wise

• Have a doctor check you out. Ensure that you can survive getting off the couch.
• Walking is not a four-letter word. The Running Room has a 10 and 1 system where their runners, after they are trained, run for 10 min and then walk for a minute. This provides active recovery, flushes lactic acid from your muscles and extends where you will meet your "wall". You may have to start by running one min. and walking ten min. and work your way up to 10 and 1.
• On your long run days the key idea is S L O W. If you cannot carry on a conversation easily you are going too fast.
• Chest Pain = STOP.
• Get clothing appropriate to exercise.
• Spandex looks silly but stops chub rub. Why do you think so many people wear it? (more wisdom: Just wear it exercising; never shopping)
• Get well fitting running shoes. Go to a specialty running / walking store.
• Wear wool or micro-fibre socks - they will prevent blisters as long as your running shoes fit.
• Be seen - wear bright colours, traffic vests, or flashing lights. Here in Nova Scotia we spend the majority of the year in the dark.
• Stretch - Before and after running. It prevents injuries and helps to keep your range of motion. It also provides a warm up and cool down.

Training Plans

There are many training plans in existence. But you have to choose the most appropriate one for you. If you are a walker with no intentions of running just remember to stretch and as your endurance increases so should your distance.

If you are graduating to running or that is your goal, then stretching before and after, as I have said, is very important. At the beginning of your running life slow is better. You should always be able to carry on a conversation. Start by running a minute and walking 10. As the weeks progress increase the running time and decrease the walking time. Adjust your times to suit your abilities. If you can run for 30 seconds and then need to walk for 10 minutes then that is your program. Here is a suggested training plan, as I stated in last month’s article your respirologist may be able to provide you with a more personalized plan or refer you to a lung rehab program that will be head and shoulders above this. Use all your resources to your advantage.
 
Week 9 and 10 in the suggested training plan are both the same as you will plateau for a week here and the slide towards more running and less walking will continue on in week 11 in the next segment.

As you see from the training plan there is lots of rest built in. This allows proper time for you to recuperate and rebuild. You don’t want to overtax the Alpha system. Over training usually results in an upper respiratory tract infection.

Keep a training log. You can purchase a pre-printed log or just use a journal. Charting your distance, pace, course, surface that you ran on, weather, shoes / sneakers worn (Running shoes are only good for approx 600 km before their shock absorbing qualities are diminished), how you felt on your run, any worrisome aches. This training log will show trends and will let you know if your training is leading towards a sickness, or injury or happy sailing. It will also serve as a motivator. You will not want to leave a blank page on a non-rest day. 

Next month: Upping the training and setting a new goal.

I am running the PEI marathon in October to raise money for Alpha-1 Canada and you can support me and the Association by donating here. How about 50 cents for each kilometre I run?

Stay healthy, commit to yourself.

Important breakthrough in gene therapy for Alpha-1 at University of Florida

University of Florida researchers have safely given new, functional genes to patients with Alpha-1, according to clinical trial findings that will be published shortly.

Three Alpha-1 patients, for the first time in their lives, were able to produce trace amounts of alpha-1 antitrypsin for up to one year, a potential step toward a gene therapy for alpha-1 antitrypsin deficiency.

In the study, researchers at University of Florida and the University of Massachusetts describe how they injected into patients’ upper arms doses of a harmless virus containing copies of the correct gene for the alpha-1 protein.

Dr. Mark L. Brantly

“When you give this therapy into the deltoid muscles of the arm, the muscle becomes a factory for making the protein that these individuals are missing,” said Dr. Mark L. Brantly, a professor of medicine and molecular genetics and microbiology at University of Florida’s College of Medicine and first author of the study. “The amounts produced were not at therapeutic levels, but the fact we were able to get any produced is an important concept undefined the proof of principle that it can be done.”

The trial established the safety of the adeno-associated virus used to “infect” patients’ cells with replacement genes, which then do the vital work of producing alpha-1 protein. Furthermore, researchers were able to detect alpha-1 antitrypsin in patients’ plasma a year after treatment, showing that the normal gene was successfully transferred and doing its intended job in the patients’ muscles.

“What I would tell the alpha-1 community is that this trial does not give us any guarantee, but there is a fighting chance to develop a therapy using this method,” said senior author Dr. Terence Flotte formerly the chairman of pediatrics at University of Florida and now the dean of the School of Medicineat University of Massachusetts Medical School. “In every patient at the highest dose in this study, we saw transgene expression. And although it approached just 1 percent of what we ultimately want, we can be reasonably optimistic that we can achieve much closer to normal values in people by using the same approach with an increased dose.”

Although patients showed some elevated immune response to the gene therapy, researchers did not detect any evidence that the patients’ bodies rejected the transferred genes or the newly created protein.

“That’s a really good sign,” said Brantly, who sees about 150 alpha-1 patients in his medical practice. “After we gave the injections, the individuals stayed on the ward for five days while we monitored them. There were no ill effects, only a minimal amount of redness”

Currently, the only treatment for patients with serious breathing symptoms involves weekly intravenous injections of alpha-1 protein derived from human plasma. The injections must continue throughout a patient’s life and does not cure the disease, but it does appear to slow the progression.

“This study gives us encouraging evidence that gene therapy for Alpha-1 is a realistic possibility,” said John Walsh, president and chief executive officer of the non-profit Alpha-1 Foundation, which has been supporting research of this kind for more than a decade. “The augmentation therapy available now has slowed down the progression of our lung disease and extended many of our lives. The promise of gene therapy addresses our ongoing issues of convenience, such as weekly infusions, and affordability. The hope of gene therapy is that we may have a one-time, brief series of injections that could allow our own bodies to produce the alpha-1 protein we need to live a normal lifetime.

“The Alpha-1 community is incredibly grateful for the progress that these dedicated investigators have made,” Walsh said.

Fourth brand of augmentation therapy likely in US

Kamada, a bio-pharmaceutical company engaged in the development, manufacturing and marketing of specialty life-saving therapeutics in Israel, announced recently that the United States Food and Drug Administration (FDA) has accepted its Biologics License Application (BLA) for intravenous alpha-1 antitrypsin, the Company’s flagship product for the treatment of alpha-1 antitrypsin deficiency.

Acceptance of the BLA by the FDA indicates that the submission satisfies the FDA’s preliminary requirements for review. The product will be evaluated by the FDA resulting in an action date in the second quarter of  2010. An inspection of Kamada’s manufacturing facilities in Israel is expected to be performed by the FDA during the review period.

If successful, Kamada’s product will join Talecris’ Prolastin™, CSL Behring’s Zemaira™ and Baxter’s Aralast™ as choices for doctors in the US prescribing augmentation therapy. Only Prolastin™ is available in Canada.

 

Who are you? We'd like your help

We have many people in our database of Alphas and others. For many of you, we have only your name and e-mail address. When we make representations to governments on behalf of our community, especially at the provincial level, we can’t say for sure how many Alphas live in each province.

We know that your privacy is important to you. It is just as important to us. We do not share information about people in our database with anyone but it would help us represent you better if we knew more about you. The three most important things we would like to know about you are whether you are a diagnosed Alpha; where you live in case we have information that isn’t suitable to be e-mailed; and the number of family members you have who have been diagnosed as Alphas.

Please help us serve you better by providing us with this information. You can e-mail us directly or sign-up on the website under “Join Us” on the side menu and fill in the blanks. If you have already registered through the website, log in and answer the new questions.

Thank you for helping us serve you better.

Alpha-1 Canada - Making a difference in the lives of Alphas

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