CINXE.COM

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It can interfere with your life with symptoms that can disrupt everything from sleep to the ability to work and socialize. People with AHP may live in constant fear of the next attack.</p> <p>Although this is a lifelong disease, it's important to know that there are things you can do that may reduce your chance of attacks and improve your quality of life.</p> </div> </div> </section> <section class="guide-sec"> <div class="container"> <div class="col-md-12 help-sec"> <div class="col-md-4"><img alt="Doctor Discussion Guide" class="img-responsive" src="/themes/custom/porphyria/assets/images/patient/livingAHP/doctor.png" /></div> <div class="col-md-8 p0"> <div class="col-xs-12 help-sec-info"> <p>To help you have a meaningful conversation with your doctor about AHP, create a personalized Doctor Discussion Guide by taking the Symptom Questionnaire. Make sure to bring it with you to your next doctor visit.</p> </div> <div class="col-xs-12"> <div class="col-xs-12 col-md-7"><a class="btn btn-default anchorlink" data-anchor="ddg" href="/ahp-resources/doctor-discussion-guide">Take the Symptom Questionnaire</a></div> <div class="col-xs-12 col-md-5">聽</div> </div> </div> </div> </div> </section> <section> <div class="container"> <div class="col-md-12 avoid"> <h2>Avoiding Triggers Can Make a Difference</h2> <p>Common triggers for attacks are shown below. Since triggers can be different for every person, there may be others not <span class="nowrap">listed here.</span></p> </div> <div class="col-md-12 difference"> <div class="col-md-6 divider"><img alt="Triggers to be aware of" class="img-responsive text-center" src="/themes/custom/porphyria/assets/images/patient/livingAHP/aware.png" /> <h2 class="text-center">Be aware of:</h2> <ul> <li>The way some drugs in certain medication classes may affect AHP, including: <ul> <li>Seizure medications</li> <li>Antihistamines</li> <li>Hormones</li> <li>Migraine drugs</li> <li>Sedatives</li> </ul> <p>Speak with your doctor if you have any questions about your medications and AHP.</p> </li> <li> <p>Hormone level fluctuations during a woman's menstrual cycle</p> </li> <li>Stress caused by <ul> <li>Infections</li> <li>Surgery</li> <li>Physical stress</li> <li>Psychological stress</li> </ul> </li> </ul> </div> <div class="col-md-6"><img alt="Lifestyle triggers to avoid" class="img-responsive text-center" src="/themes/custom/porphyria/assets/images/patient/livingAHP/avoid.png" /> <h2 class="text-center">Try to avoid:</h2> <ul> <li>Drinking alcohol</li> <li>Smoking</li> <li>Fasting or extreme dieting</li> </ul> </div> </div> </div> </section> <section class="greySection" style="padding:40px 0 10px 0;"> <div class="container"> <div class="col-md-12"> <h1>Get the help you need</h1> <h2>Talk to your healthcare team</h2> <p>If you have AHP, it's important to keep communication lines with your healthcare team open. Sharing your symptoms and concerns can help them tailor a management plan that is right for you.</p> <h2>SEEK INFORMATION AND SUPPORT FROM THESE INDEPENDENT PATIENT ORGANIZATIONS</h2> <div class="row boot-margins"> <div class="col-md-12 mb-30 fpo-sec"> <div class="row boot-margins"> <div class="col-md-3"><img alt="APF" class="img-responsive" data-entity-type="file" data-entity-uuid="1ec3a37e-26a6-4990-9e04-7992d658fff7" src="/sites/default/files/inline-images/APF_Logo_Web.png" style="margin-top: -25px;" /></div> <div class="col-md-9"> <p>The American Porphyria Foundation focuses on porphyria education, advocacy, support services, and research.</p> <p>Visit <a class="warnOnLeavePatientModalTrigger" href="https://www.porphyriafoundation.org/for-patients/support-assistance/patient-education-meetings/" target="_blank">American Porphyria Foundation</a> to learn more.</p> </div> </div> </div> </div> <div class="row boot-margins"> <div class="col-md-12 fpo-sec"> <div class="row boot-margins" style="margin-top: -21px;"> <div class="col-md-3"><img alt="Global Genes" class="img-responsive" data-entity-type="file" data-entity-uuid="09e046c4-c671-4e15-8d8a-ae390e576a3f" src="/sites/default/files/inline-images/GG_Logo.png" style="margin-top: -5px;" /></div> <div class="col-md-9"> <p>Global Genes provides helpful resources while sponsoring local and global events to help connect, empower, and inspire the rare disease community.</p> <p>Visit <a class="warnOnLeavePatientModalTrigger" href="https://globalgenes.org/" target="_blank">Global Genes</a> to learn more.</p> </div> </div> </div> </div> <div class="row boot-margins"> <div class="col-md-12 fpo-sec"> <div class="row boot-margins" style="margin-top: -18px;"> <div class="col-md-3"><img alt="National Organization for Rare Disorders Logo" class="img-responsive" src="/themes/custom/porphyria/assets/images/patient/livingAHP/NORD_Logo.png" style="margin-top: -5px; padding-bottom: 12px;" /></div> <div class="col-md-9"> <p>The National Organization for Rare Disorders offers educational videos and interactive webinars along with a variety of additional resources.</p> <p>Visit the <a class="warnOnLeavePatientModalTrigger" href="https://rarediseases.org/for-patients-and-families/" target="_blank">National Organization for Rare Disorders </a> to learn more.</p> </div> </div> </div> </div> <div class="row boot-margins" style="margin-top: 25px;"> <div class="col-md-12 fpo-sec"> <div class="row boot-margins" style="margin-top: -15px;"> <div class="col-md-3"><img alt="United Porphyrias Association Logo" class="img-responsive" src="/themes/custom/porphyria/assets/images/patient/livingAHP/UPA_Logo.png" style="margin-top: -4px; padding-bottom: 20px;" /></div> <div class="col-md-9"> <p>The United Porphyrias Association is focused on advancing disease awareness, research, and therapies in all the porphyrias.</p> <p>Visit the <a class="warnOnLeavePatientModalTrigger" href="https://www.unitedporphyrias.org/" target="_blank">United Porphyrias Association </a> to learn more.</p> </div> </div> </div> </div> <h2 style="margin-top:11px;">Reach out to family</h2> <p>With a disease like AHP, it can be helpful if family and/or close friends understand the disease so they know how to best support you. Be sure to explain to the people close to you the importance of steps you're taking to avoid triggers.</p> </div> </div> </section> <section class="connection" style="padding-top:40px;"> <div class="container"> <div class="row"> <div class="col-md-12"> <h2>Talking with others about AHP</h2> <p>Consider talking with family, friends, and possibly co-workers about AHP. Explaining AHP to them can help them understand the unique burden of this debilitating disease. It can be challenging, but here are some tips that can make those conversations easier:</p> <div class="col-md-5 col-sm-12 visible-lg"><img alt="Person discussing acute hepatic porphyria with friends and family" class="img-responsive" src="/themes/custom/porphyria/assets/images/patient/livingAHP/family-connection.png" /></div> <div class="col-md-7 col-sm-12"> <ul class="decimal-bullet"> <li aria-label="Number 1" role="img"><strong>Start by saying that AHP is real:</strong> Although rare, with painful symptoms that mimic other diseases, AHP is a real genetic disease that can disrupt one's daily life <ul> <li>Some may feel that a person with AHP is exaggerating or being overly dramatic. Explain to family, friends, and co-workers that AHP is a rare, genetic disease. It is often confused with other diseases. This can help them understand the unique burden of AHP</li> </ul> </li> <li aria-label="Number 2" class="two" role="img"><strong>Tell them that some people with AHP may experience debilitating attacks:</strong> AHP can cause attacks, leading to absences from work, school, and social functions <ul> <li>Consider telling your immediate family, supervisor, and human resources manager about the unpredictability of these attacks, so they can be supportive when they occur</li> </ul> </li> <li aria-label="Number 3" class="three" role="img"><strong>Explain that some people with AHP experience ongoing symptoms:</strong> The disease can have long-term symptoms that require daily management, including diet and lifestyle changes <ul> <li> <p>Consider making your family, friends, and co-workers aware of these diet and lifestyle changes</p> </li> </ul> </li> </ul> </div> <div class="col-md-5 col-sm-12 hidden-lg"><img alt="Person discussing acute hepatic porphyria with friends and family" class="img-responsive" src="/themes/custom/porphyria/assets/images/patient/livingAHP/family-connection.png" /></div> <div class="col-sm-12"> <h2>THE FAMILY CONNECTION</h2> <p>When someone is diagnosed with AHP, it is important to tell family members so they can consider getting genetic testing. Even though family members may not have symptoms, they may still have a genetic mutation associated with AHP. Testing will enable those who test positive for the mutation to be educated about the disease.</p> </div> </div> </div> </div> </section> <a id="signUpNow" name="signUpNow"></a></main> </div> </div> </article> </div> <div class="views-element-container" id="block-views-block-view-footer-custom-block-block-view-footer"> <div><div class="js-view-dom-id-66fed0c545edeb7f20ae0e877b3c0ac322cee4e14c053a7bcc8f817295acf8cb"> </div> </div> </div> <div id="signUpNow" class="patient"> <section id="signUp"> <div class="container">  <div id="patient_signup_form"> <div class="row"> <h2>SIGN UP to receive updated information about AHP from Alnylam.</h2> <p><em>All fields are required.</em></p> </div> <div id="errorMessages"> </div> <form class="form" id="signupForm" method="post" novalidate=""> <input type="text" class="hpot" name="hcap" value=""> <div class="row formOptions"> <div class="col-md-3 col-lg-3 col-sm-6 col-xs-12"> <input name="designation" type="button" value="Patient" class="active" /> </div> <div class="col-md-3 col-lg-3 col-sm-6 col-xs-12"> <input name="designation" type="button" value="Caregiver" /> </div> <div class="col-md-3 col-lg-3 col-sm-6 col-xs-12"> <input name="designation" type="button" id="MedicalProfessionalBTN" value="Medical Professional" /> </div> <div class="col-md-3 col-lg-3 col-sm-6 col-xs-12"> <input name="designation" id="otherButton" type="button" value="Other" /> </div> </div> <div class="row"> <div class="col-sm-6 col-md-6"> <label for="tbFirstName">First Name</label> <input class="form-control" id="tbFirstName" maxlength="50" name="firstName" required="" type="text" /> </div> <div class="col-sm-6 col-md-6"> <label for="tbLastName">Last Name</label> <input class="form-control" id="tbLastName" maxlength="50" name="lastName" required="" type="text" /> </div> </div> <div class="row"> <div class="col-sm-6 col-md-6"><label for="tbEmail">Email Address</label> <input class="form-control" email="" id="tbEmail" maxlength="254" name="email" required="" type="email" /> </div> <div class="col-sm-6 col-md-6"><label for="tbZipCode">ZIP Code</label> <input class="form-control" id="tbZipCode" maxlength="10" minlength="5" name="postalCode" number="" required type="text"/> </div> </div> <div id="otherWrapper" style="display: none;" class="row"> <div class="col-sm-12 col-md-12"> <label>I describe myself as:</label> <select style="color:black;" name="otherDesignation"> <option>- SELECT -</option> <option value="1">Academic/Researcher</option> <option value="2">Investor</option> <option value="3">Job Candidate</option> <option value="4">Media Professional</option> <option value="5">Patient Group Leader/Staff</option> <option value="6">Payer</option> <option value="7">Other</option> </select> </div> </div> <div class="row"> <div class="col-sm-12 col-md-11 consent"> <label class="control control-checkbox">I am 18 years old or older, a US resident, and would like to receive AHP updates from Alnylam Pharmaceuticals. <input type="checkbox" id="citizen" name="receiveUpdates" required checkboxes aria-required="true" /> <span class="control_indicator"></span> </label> </div> </div> <div class="row"> <div class="col-sm-12 col-md-11 consent"> <label class="control control-checkbox">By submitting this form, I agree to the Alnylam <a href="http://www.alnylam.com/privacy-policy/" target="_blank">Privacy Policy</a> and consent to the processing of my personal data per the terms outlined in the <a href="http://www.alnylam.com/privacy-policy/#Data-Privacy-Notification-and-Consent" target="_blank">Data Privacy Notification and Consent</a>. <input type="checkbox" id="consent" name="consent" required checkboxes aria-required="true" /> <span class="control_indicator"></span> </label> </div> </div> <div class="row"> <div class="col-md-12 text-center"> <input type="submit" id="submitBtn" class="btn btn-default" value="Sign Up Now" /> </div> </div> </form> </div>  <div id="patient_signup_thankyou" class="flex-row-container"> <div class="flex-row-item"> <h2><strong>Thank you</strong> for connecting with us.</h2> <p>One step away! 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