Spinal muscular atrophy (SMA) is a disease that causes muscles to weaken and atrophy. There are different types, some of which are diagnosed at birth and some that are diagnosed later in life, but many people with the condition have it from a very young age.

SMA is a challenging condition to live with. It&rsquo;s also a challenging condition for caregivers. And caregiving can be especially challenging as a person with SMA transitions from childhood to adolescence to young adulthood.

If you find yourself struggling to keep up with your evolving role as a caregiver, the following strategies may help.

Keep up with change 
SMA is a lifelong condition, and the needs of a person with SMA will change over time. Likewise, a caregiver will find that their role will change&mdash;and sometimes change quickly. Being a freshman in high school and being a freshman in college are separated by only four or five years&mdash;but it is a period of rapid growth and development.

How do you keep up with change? Open lines of communication are important. While people with SMA have unique challenges and concerns, they also face the same challenges and concerns as any other young person. Don&rsquo;t lose sight of the normal experience of growing up. Recognize a person&rsquo;s needs, such as a greater need for privacy. Foster independence, such as encouraging a person to take a greater role in their own healthcare. Encourage good health, including exercise, eating well, and avoiding things like alcohol, smoking, and recreational drug use.

Also discuss your needs, and how to work together to support each other. For a young person living with SMA, being a source of support and encouragement for someone else can help foster a sense of independence.

And remember that you do not have to do this alone. Counselors, therapists, educators, and healthcare providers are there to help. And sometimes a young person may have an easier time talking to someone outside their family.

Recognize caregiver burnout 
Caregiving is not easy, and caregiver burnout is very real. Caregiver burnout refers to feeling exhausted physically, mentally, and emotionally. Some signs and symptoms of caregiver burnout include:

<ul>
	<li>Skipping meals</li>
	<li>Feeling hopeless, restless, or anxious</li>
	<li>Avoiding phone calls with friends or frequently cancelling plans</li>
	<li>Difficulty going to sleep or staying asleep</li>
	<li>Physical aches and pains</li>
	<li>Feeling resentment toward the person for whom you&rsquo;re caring</li>
	<li>Difficulty concentrating on tasks and chores</li>
</ul>

Remember, in order to provide the best care for someone else, you need to be taking care of yourself. Because things like nutrition and overall health are important to someone living with SMA, by taking care of yourself, you will be setting a good example.

Be proactive against stress 
It&rsquo;s important to recognize when you&rsquo;re stressed and need a break. It&rsquo;s even more beneficial to be proactive about reducing stress. Some ways to counteract stress include:

<ul>
	<li>Taking a day off to do something you enjoy&mdash;going for a hike, going to see a movie, meeting up with friends.</li>
	<li>Indulging every now and then, whether it is a dessert or a day at a spa.</li>
	<li>Working with a mental health professional&mdash;do not underestimate how helpful counseling and therapy can be.</li>
	<li>Getting enough sleep&mdash;consider turning off electronics an hour before bedtime and going to sleep at the same time every night.</li>
	<li>Staying organized and scheduling time to relax each day.</li>
	<li>Joining a support group for caregivers, where you can connect with other people who understand the experience.</li>
	<li>Also consider hiring a professional caregiver to handle some of the day-to-day responsibilities&mdash;and give you back some time and energy. There are apps and services that can connect you with professional caregivers (CareLinx by Sharecare is one example).</li>
</ul>

Remember that you are not superhuman. Ask other family members for help, and don&rsquo;t be afraid to reach out to healthcare providers if you need guidance. Remember, you won&rsquo;t be able to care for your loved one if you don&rsquo;t take care of yourself.

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Hereditary angioedema (HAE) is a rare genetic disorder that causes recurring episodes of severe swelling throughout the body.

Also called attacks, episodes of HAE are often unpredictable, painful, and life-threatening. Episodes that affect the airways can impair a person&rsquo;s ability to breathe. Episodes that cause inflammation in the abdomen can cause symptoms so severe that a person may need to be hospitalized.

When an attack occurs, people with HAE will need medications to reverse the attack. These are called on-demand or acute therapies. Everyone with HAE should work with a healthcare provider to prepare for attacks. They will need training on how to take a rescue medication (if it is self-administered) or where to seek treatment (if a rescue medication needs to be administered by a healthcare provider).

They should also have a plan on where to seek emergency medical care and how to recover once an attack is over.

In addition to rescue medications, there are also medications that can prevent HAE attacks. These are called preventive therapies or prophylactic therapies.

In the past, preventive therapies were reserved for very severe cases of HAE, or instances where a person was at a higher risk of an HAE episode&mdash;such as a surgical procedure, dental work, or a period of high stress, which are all known triggers.

Today, preventive therapies have become an important part of standard treatment for many people with HAE&mdash;many are taking medications on an ongoing schedule to prevent attacks.

This is helped by the fact that numerous new medications have become available, giving healthcare providers and people with HAE more options.

If you are living with HAE, it is worth talking to your healthcare providers about these treatment options. Preventive therapies can help reduce the number of attacks a person experiences and reduce the severity of symptoms during an attack.

In addition to fewer attacks and less severe symptoms, here are five possible benefits of preventive therapy.

Better mental health 
Living with HAE can be a burden on a person&rsquo;s mental health. Anyone living with HAE is living with some degree of uncertainty&mdash;When will the next attack occur? Will it be severe? Will I need to go to a hospital? What plans will it disrupt? How long will it take to get back to feeling normal?

Some research has found that people who are treated with long-term preventive therapy showed fewer symptoms of depression and anxiety than those who were only treated with acute therapies.

Less emergency care 
People living with HAE want to avoid attacks that require urgent care or hospital visits. Beyond the fact that attacks that require emergency care are typically more severe (more painful, longer recovery time, more likely to be life threatening), urgent care and hospital visits are expensive.

Improved quality of life 
One of the hardest aspects of living with a chronic and unpredictable health condition like HAE is the way it interferes with every other part of your life&mdash;your ability to maintain friendships and other relationships, work or go to school, pursue goals and interests, your moods and how you feel about yourself. Collectively, this is referred to as &ldquo;quality of life.&rdquo;

People with HAE who are treating with long-term preventive therapies report better quality of life, better health, and better performance in work and school.

Easier on caregivers 
Many people with HAE rely on the help of a caregiver&mdash;oftentimes, a family member or other loved one. Caregivers may be directly involved with care by helping administer medications or taking care of a loved one while that person is recovering from an HAE attack.

They may also help with the practical aspects of living with HAE, such as taking on physically demanding errands or chores that could trigger an attack. And of course, caregivers can be an important source of emotional support.

HAE therapies that lead to fewer and less severe attacks will also benefit caregivers, who will need to spend less time helping a loved one address and cope with attacks&mdash;and hopefully less emotional energy, worrying about the chances of their loved one experiencing a severe attack.

Remember that HAE is a different experience for everyone. Your best source of information about your treatment options will be your healthcare provider.

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Well, I have taken care of so many patients in my career and we know obesity experts realize that those who keep food diaries or food logs do better in terms of weight loss and weight maintenance than those people who do not keep food diaries. And what I get in clinic is, I really don't have time to keep a food diary, or I forgot it at home, or the dog ate it. 

The reality is that those people who do not keep food diaries, there's the obstacle right there. The reason why people don't like to keep food diaries is it's actually going to change your lifestyle because think about it, if you write everything you eat down you may think twice because you know you're going to have to write it down, you may think twice about those 10 cookies that you normally would eat and be able to forget about it. 

Because the reality is if you have to write it down, you're not going to forget about it. And that is step one in changing your lifestyle, is to become aware of what you're eating and that's why food diaries work. 
  

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