Uncommon Threads: Exploring Rare Diseases (LAU 6FN Spring 2023 Issue)

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19 21 24 04 CYSTIC FIBROSIS 08 10 13 SPINA BIFIDA SICKLE CELL DISEASE THE RED CORNER: STDs & STIs DID YOU KNOW? CORNER GAME TIME! MEET OUR COMMITTEE

Cystic fibrosis (CF) is an autosomal recessive genetic disorder that causes severe damage to the lungs, digestive system, and other organs in the body It results from mutations in the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) gene, which is responsible for producing the CFTR protein.

The CFTR protein is a complex chloride channel and regulatory protein found in all exocrine tissues Disrupted transport of chloride and other ions, such as sodium and bicarbonate, leads to thick, viscous secretions in the lungs, pancreas, liver, intestines, and reproductive tract as well as increased salt content in sweat gland secretions

The signs and symptoms of CF can be divided into four categories:

SINO-PULMONARY MANIFESTATIONS

Chronic cough, sputum production, persistent infections, chest tightness, airway obstruction (wheezing) and sinus drainage.

GASTROINTESTINAL MANIFESTATIONS

Abdominal pain, steatorrhea, bowel obstruction, chronic liver disease, pancreatitis and pancreatic insufficiency

NUTRITIONAL PROBLEMS

Fat-soluble vitamin deficiency (vitamins A, D, E, K), chronic metabolic alkalosis, hypoproteinemia and failure to grow in height and weight.

MALE UROGENITAL ABNORMALITIES

Azoospermia and congenital bilateral absence of vas deferens.

Include but are not limited to:

Malnutrition

Diabetes and Pancreatitis

Renal or hepatic failure

Both of the below criteria should be met to diagnose CF:

One criteria from the below

Clinical symptoms consistent with CF in at least one organ system (e g , chronic pulmonary disease, chronic sinusitis, characteristic gastrointestinal and nutritional abnormalities, salt loss syndromes, obstructive azoospermia)

A positive newborn screen

Having a sibling with CF

In addition to another critera from the below nasal epithelium.

Any of the below evidence of CFTR dysfunction: Elevated sweat chloride ≥60mmol/L Presence of two mutations in the CFTR gene, one from each parental allele

Abnormal NPD which measures abnormalities in ion transport across the

Distal intestinal obstruction syndrome

heart failure

Bronchiectasis, pneumothorax, hemoptysis, infections

Cancers of the digestive tract

Urinary incontinence

Infertility

Mental health problems such as depression and anxiety

Intervention

Indication / Timing Comments

CFTR Modulators

Most patients, depending on genotype and age.

The CFTR modulator and strength of recommendation depend on the genotype.

Inhaled DNase

2.5 mg daily or twice daily

Inhaled Hypertonic Saline

Airway Clearance Physiotherapy (Chest Physiotherapy)

Vaccinations

Palivizumab

Infection Control Measures

Inhaled Beta-2 Adrenergic Receptor Agonist

Short acting: Albuterol

Long acting: Salmeterol

Recommended for most children and adults with CF.

DNase generally given once daily and hypertonic saline twice daily Administer a shortacting bronchodilator before each treatment.

Use inhaled DNase for all children 2 years and older regardless of symptoms. Use hypertonic saline for all children 2 years and older. Regimen should be individualized.

All patients who produce sputum, twice daily.

All patients should receive:

Annual influenza vaccine

Pneumococcal vaccine, with PCV13 and PPSV23, depending on age and prior immunization status

All other routine childhood vaccines COVID-19 vaccines

More evidence required.

Contact precautions, physical separation of patients, hand hygiene, use of masks by patients.

All patients, before each dose of inhaled antibiotics, DNase, hypertonic saline, or airway clearance therapy session

As a rescue medication for acute symptoms, in patients with signs or symptoms of airway hyperresponsiveness.

A i r w a y C l e a r a n c e T h e r a p i e s I n f e c t i o n P r e v e n t i o n B r o n c h o d i l a t o r s
According to the Cystic Fibrosis Foundation

High-dose Ibuprofen (Maximum 3200mg/day)

Inhaled Glucocorticoids

Indication / Timing Comments

In children 6 to 17 years with good lung function (FEV1 >60%)

In clinical practice, this is not commonly used in the United States.

Patients with definite signs and symptoms of asthma.

ACUTE EXACERBATIONS

Not recommended in severe lung function abnormalities

Requires pharmacokinetic studies to ensure proper dosing and monitoring for adverse effects (gastrointestinal bleeding, renal impairment).

Concerns about adverse effects especially on growth.

The most common pathogen is Pseudomonas aeruginosa, but others may be involved as well. Antimicrobial therapy is selected based on both the pathogen and susceptibility results.

Pseudomonas aeruginosa

Penicillin: Piperacillin/Tazobactam

Cephalosporins: Ceftazidime, Cefepime

Carbapenems: Imipenem/Cilastatin, Meropenem

Fluoroquinolones: Ciprofloxacin, Levofloxacin

Aminoglycosides: Gentamicin, Tobramycin, Amikacin

Aztreonam

CHRONIC SUPPRESSIVE ANTIBIOTIC THERAPY

CF patients are at a constant risk of infection even after receiving treatment for acute infections Options for chronic suppressive therapy include:

Inhaled Tobramycin or inhaled Aztreonam

Chronic oral antibiotic therapy (e.g., with Azithromycin)

Staphylococcus aureus

Nafcillin, oxacillin or cephalosporins

If Methicillin-resistant (MRSA): Linezolid, Vancomycin

Intervention A n t ii n f l a m m a t o r y t h e r a p y

Spina bifida is a congenital neural tube defect that affects the spine and spinal cord. It is a rare condition with a prevalence of 0.7 cases per 1,000 live births in the United States, with similar rates reported globally. In Lebanon, the incidence rate is lower, with an estimated 0.2 cases per 1,000 live births.

There are three main types of Spina Bifida:

Spina bifida occulta is the mildest form. It occurs when the spinal column is not fully closed but the spinal cord and nerves are normal.

Meningocele occurs when when the spinal membrane pushes out through an opening in the spine, but the spinal cord and nerves are not affected

Myelomeningocele is the most severe form and can lead to paralysis of the legs and the bladder as well as bowel control problems and learning disabilities. It occurs when the spinal cord and nerves push out through an opening in the spine.

Difficulty walking

Bladder and bowel control problems

Lower back pain

Muscle weakness

Difficulty with fine motor skills

In severe cases, it can cause hydrocephalus, which can lead to intellectual disability, developmental delays, and other neurological problems.

Can be made through prenatal

Ultrasonography

Magnetic resonance imaging (MRI)

Amniocentesis

In order to prevent spina bifida, pregnant women should take 400 to 800 micrograms of folic acid daily before conception and during the first trimester of pregnancy. This has been shown to significantly reduce the risk of neural tube defects, including spina bifida.

Typically the first line treatment modality for patients with myelomeningocele

The goal of surgery is to repair the spinal cord and close the opening in the spine to prevent further damage to the spinal cord and prevent infection.

Helps improve mobility and prevent muscle wasting

Physical therapists can also help individuals develop strength, coordination, and balance.

Can help individuals with spina bifida improve their daily living skills, such as dressing and grooming.

Occupational therapists can also help these individuals find adaptive equipment to make daily tasks easier

Pain relievers: Including nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, acetaminophen, and naproxen.

Muscle relaxants: Baclofen and tizanidine are commonly used to manage muscle spasms and improve mobility These medications work by blocking nerve impulses that cause muscle spasms.

Anticonvulsants: Gabapentin and pregabalin can be used to manage neuropathic pain, as well as prevent seizures. They work by stabilizing the electrical activity in the brain to prevent seizures

Medications for bladder control: Oxybutynin, tolterodine, and solifenacin are commonly used to manage bladder dysfunction. They work by blocking the action of acetylcholine, which is a neurotransmitter that causes bladder contractions.

Antidepressants: Duloxetine and amitriptyline are commonly used to manage neuropathic pain and depression

Antibiotics: May be used to treat infections, a common complication in individuals with spina bifida due to impaired mobility and bladder dysfunction.

Antispasmodics: Dantrolene is a muscle relaxant that can be used to manage spasticity. It works by decreasing the release of calcium from muscle cells, leading to relaxation of muscle fibers

In recent years, research has explored the use of botulinum toxin type A (Botox) in the treatment of spasticity in individuals with spina bifida Botox is injected directly into the affected muscles and temporarily blo release of acetylcholine

S U R G E R Y
P H Y S I C A L T H E R A P Y
O C C U P A T I O N A L T H E R A P Y P H A R M A C O T H E R A P Y

S i c k l e C e l l S i c k l e C e l l D i s e a s e D i s e a s e

Anemia is a common effect of Sickle Cell Disease, but it can be treated.

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. In patients with SCD, the hemoglobin is abnormal, which causes red blood cells to become hard and sticky and look like a Cshaped farm tool called a “sickle.” The sickle cells die early, which causes a constant shortage of red blood cells.

Types

HbSS: People who have this form of SCD inherit two genes, one from each parent, that code for hemoglobin “S.” Hemoglobin S is the abnormal form of hemoglobin that causes the red cells to become rigid, and sickle-shaped This is commonly called sickle cell anemia and is usually the most severe form of the disease.

HbSC: People who have this form of SCD inherit a hemoglobin “S” gene from one parent and a gene for a different type of abnormal hemoglobin called “C” from the other parent. This is usually a milder form of SCD.

HbS beta thalassemia: People who have this form of SCD inherit a hemoglobin “S” gene from one parent and a gene for beta thalassemia, another type of hemoglobin abnormality, from the other parent There are two types of beta thalassemia: “ zero ” (HbS beta0) and “plus” (HbS beta+). Those with HbS beta0-thalassemia usually have a severe form of SCD. People with HbS beta+-thalassemia tend to have a milder form of SCD

Causes

SCD is a genetic condition that is present at birth It is inherited when a child receives two genes, one from each parent, that code for abnormal hemoglobin.

Diagnosis

SCD is diagnosed with a simple blood test.

It can also be diagnosed while the baby is in the womb using tests such as chorionic villus sampling and amniocentesis to can check for chromosomal or genetic abnormalities

People with sickle cell trait can be found most heavily in areas of the world that have malaria. In fact, the sickle cell trait can protect a person from becoming infected with malaria!

Complications

Stroke

Acute chest syndrome

Pulmonary hypertension

Organ damage

Splenic sequestration

Blindness

Leg ulcers.

Gallstones

Priapism.

Deep vein thrombosis.

Pregnancy complications.

Signs & Symptoms Treatment

Episodes of pain

To prevent some of the complications, patients should Swelling

Drink plenty of water

Avoid getting too hot or cold. Avoid high altitudes. Avoid places or situations with low oxygen levels.

Hydroxyurea (Droxia, Hydrea, Siklos): It may help patients with SCD ages 2 years and older

Hydroxyurea is an antimetabolite used to treat sickle cell anemia crisis.

L-glutamine Oral Powder (Endari): It may help people with SCD ages 5 years and older. Endari works to increase the amount of free glutamine circulating in the blood.

Crizanlizumab (Adakveo): It may help people with SCD ages 16 years and older.

Voxelotor (Oxbryta): It may help people with SCD ages 4 years and older. It is used to prevent the painful and sometimes lethal vaso-occlusive crises associated with SCD

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hands and feet Frequent
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Vision

SEXUALLY TRANSMITTED DISEASES AND INFECTIONS

Sexually Transmitted Diseases

Sexually transmitted infections (STIs), also known as sexually transmitted diseases (STDs) or more rarely, venereal diseases (VDs), are diseases that are spread predominantly by unprotected sexual contact, and sometimes by genital contact.

The infection can be passed on while performing vaginal intercourse, but also oral sex and anal sex, via the exchange of body fluids such as blood, semen, vaginal secretions, saliva and breast milk.

Some STIs can also be transmitted during pregnancy, childbirth and breastfeeding and through infected blood or blood products.

STDs may present as asymptomatic, or may cause only mild symptoms Therefore, it is possible to have an infection and not know it.

Complications

If left untreated, STDs can lead to serious complications such as neurological and cardiovascular disease, infertility, ectopic pregnancy, stillbirths, and increased risk of Human Immunodeficiency Virus (HIV) and subsequently, acquired immunodeficiency syndrome (AIDS).

Testing

Getting tested for STDs is very important for sexually active people They typically have a good prognosis, which means that they are well managed by medications, and some STDs are entirely curable.

Chlamydia

Chlamydia

Chlamydia is caused by the bacteria chlamydia trachomatis. Four million new cases of Chlamydia are reported every year.

Symptoms

Discharge and burning during urination, but often there are no symptoms.

Testing

Most commonly, a urine sample or genital swab is taken and sent to a laboratory for testing. A healthcare provider may also perform a physical exam or take a sample during a pelvic exam.

Treatment

Chlamydia is easily treated with antibiotics. A course of either Doxycycline, usually given for a week, or azithromycin, taken once a day for 3 days, can be prescribed.

Gonorrhea is a sexually transmitted bacterial infection that can cause infertility and increase the risk of acquiring or transmitting HIV

Symptoms

Symptoms include discharge, pain or burning during urination and painful or swollen testicles in men. However, many people with gonorrhea do not show symptoms.

Testing

It is important to get tested and treated promptly to avoid complications and reduce the spread of antibiotic-resistant strains.

Treatment

It can be treated with antibiotics such as ceftriaxone, cefixime and spectinomycin by intramuscular injection, but some strains have developed resistance to certain antibiotics

What is Syphilis ?

Testing

Syphilis is a sexually transmitted bacterial infection that can cause serious health problems if left untreated. It progresses through stages, with symptoms ranging from a painless sore to rashes, fever, and fatigue

In later stages, it can cause neurological problems, blindness, and even death.

Treatment

It's important to get tested and treated promptly to avoid complications and reduce the spread of the infection.

Syphilis can be treated with antibiotics, usually penicillin, but the type and duration of treatment depend on the stage of the infection.

Herpes is a viral infection caused by the herpes simplex virus (HSV). There are two types of herpes virus: HSV-1 and HSV-2.

Cause

HSV-1 primarily causes oral herpes, which is also known as cold sores or fever blisters, around the mouth. HSV-2 primarily causes genital herpes. Herpes can also spread through close personal contact, such as kissing or sharing eating utensils, towels or razors.

Symptoms

Herpes symptoms include painful blisters or sores on the lips or around the genital area as well as itching, burning, and tingling sensations in the affected area

Treatment

While there is no cure for herpes, antiviral medications such as acyclovir, valacyclovir and famciclovir can be used to manage outbreaks and reduce the risk of transmission to others.

Human Papillomavirus

The Human Papillomavirus (HPV) is a sexually transmitted virus that can cause genital warts and several types of cancer, including cervical, vaginal, and anal cancer.

Symptoms Treatment

Gardasil 9: This vaccine protects against nine types of HPV (types 6, 11, 16, 18, 31, 33, 45, 52, and 58) including seven highrisk types that can cause cancer, as well as two low-risk types that can cause genital warts.

There are many different types of HPV, some of which are lowrisk and can cause genital warts, while others are high-risk and can cause cancer.

Many people with HPV don't show symptoms, but the virus can be detected through testing.

Salicylic acid: For use on common warts.

Imiquimod: This prescription cream might enhance your immune system's ability to fight HPV.

Podofilox: works by destroying genital wart tissue.

Trichloroacetic acid: This chemical treatment burns off warts on the palms, soles, and genitals.

Vaccines

Cervarix: This vaccine provides protection against two high-risk types of HPV (types 16 and 18) that cause cervical cancer.

HIV/AIDS

The Human Immunodeficiency Virus (HIV) is a virus that attacks the body's immune system, making it harder for the body to fight off infections and diseases.

Transmission Complications Symptoms

HIV is primarily spread through sexual contact, sharing of needles, or from a mother to her child during pregnancy, childbirth, or breastfeeding

If left untreated, HIV can lead to the Acquired Immunodeficiency Syndrome (AIDS), which is a late and lifethreatening stage of HIV infection characterized by opportunistic and often deadly infections

Most people have flu-like symptoms within 2 to 4 weeks after infection characterized by fever, headache, muscle aches and joint pain, rash, sore throat, painful mouth sores, swollen lymph glands mainly on the neck, diarrhea, weight loss, cough and night sweats.

Antiretroviral therapy is used to manage HIV, and regimens include: Tenofovir/Emtricitabine (TDF/FTC) plus Efavirenz (EFV), Tenofovir/Emtricitabine (TDF/FTC) plus Dolutegravir (DTG) and Abacavir/lamivudine (ABC/3TC) plus Dolutegravir (DTG).

Treatment

AN AMERICAN WHEELCHAIR RACER AND OLYMPIAN WITH SPINA BIFIDA

Jean Driscoll Jean was born with spina bifida. That did not stop her from winning the Boston Marathon seven times and setting world records in her races She is the perfect example to demonstrate that:

If there is a will, there is a way!

AN ANCIENT DISEASE

The origins of Cystic Fibrosis date back to the Middle Ages. "Woe to the child who tastes salty from a kiss on the brow, for he is cursed and soon must die," stated old stories This is believed to be the first description of CF.

A WEIRD INGREDIENT

Pulmozyme is an inhaled medication that cuts up extracellular DNA to thin mucus and treat cystic fibrosis Developed in 1993, it was the first medication designed to treat CF. Its source is rather peculiar however: Chinese hamster ovary cells.

SWEET AS GRAPES!

Pseudomonas aeruginosa, which is often the cause of infection in cystic fibrosis patients, is said to smell like tortillas or sour grapes in the laboratory.

GameTime

Find the brand name:

I. Tenofovir/ Emtricitabine/ Efavirenz

2. Abacavir/ Lamivudine/ Dolutegravir

3. Podofilox

4. Acyclovir

5. Spectinomycin

6. Ceftriaxone

7. Doxycycline

8. Imiquimod

9. Doravirine/ Lamivudine/ Tenofovir

Solve the Riddle:

I'm a condition so rare, it's a surprise, I affect the muscles, causing weakness to arise, My name comes from the Greek word for slack, realize, And for those who have me, it's a tough enterprise.

What am I?

(Hint: This is another disease not covered in this issue!)

a. Trobicin

b. Aldara

c. Rocephin

d. Delstrigo

e Condylox

f. Biktarvy

g. Triumeq

h. Zovirax

i. Vibramycin D

GameTime

3. Condition when the spinal membrane pushes out through an opening in the spine, but the spinal cord and nerves are not affected

6. Channel that is disrupted in cystic fibrosis

8. Class of rescue agent for shortness of breath in cystic fibrosis

10. Vaccine that protects against the two highest risk types of HPV

1. Supplement taken be pregnant women to prevent spina bifida in newborns

2. Only approved sickle cell anemia medication that can be used in a 3 year old patient

4. Disease state that shows protective properties against sickle cell anemia

5. The most severe genetic variation of sickle cell anemia.

7. Potential antispasmodic that acts by inhibiting the release of acetylcholine.

9. One of the agents used to prevent seizures and neuropathic pain in spina bifida patients.

Crossword! 1 2 3 4 5 6 7 8 9 10
Rita Murr, P3 Writer & Editor Cyrine Dhainy, P3 Writer Elena Chalhoub, P2 Writer Mabelle Rechdan, P2 Writer & Designer Nour Chidiac, P3 Chairperson Designer & Editor Amanda Rose Khater, P4 Secretary Writer & Editor Nour Adra, P2 Writer Sarah El Ali, P2 Writer Thea Maria Nader, P2 Writer Maria Fadel, P1 Writer Mahmoud Nassrallah, P2 Writer & Editor Marc Anlian, P2 Writer

Special Thanks

THIS CONCLUDES THE EIGHTH ISSUE OF SIXTHFLOORNEWS! RARE DISEASES EDITION!

Thank You to the School of Pharmacy for giving us this opportunity.

Thank You to the students and faculty that participated.

Thank You to the CCA Coordinator, Dr. Aline Bou Maroun and CCA Chairperson, Lea Ghajar.

Thank You to the other task forces: Media, Organizing, Scheduling and Pharmacy Education.

A Huge Thank You to our readers for making it this far in the newsletter!

Reading is not just informative, but also empowering. Armed with knowledge and understanding, we can take control of our health and make informed decisions about our own well-being and that of others.

Happy Easter Everyone! And Eid Mubarak! We wish you blessed and happy Holidays, joyous time with family and friends, and well-deserved rest!

So, keep exploring, keep learning, and keep making a difference in your own life and in the lives of others.

References

Cystic Fibrosis

Clinical care guidelines Cystic Fibrosis Foundation https://www cff org/medical-professionals/clinical-care-guidelines Accessed April 15, 2023

ECFS Best Practice Guidelines: The 2018 revision https://www cysticfibrosisjournal com/article/S1569-1993(18)30029-8/pdf Accessed April 15, 2023

Spina Bifida

Tomiyoshi T World's first stem cell treatment for spina bifida delivered during fetal surgery UC Davis Health https://health.ucdavis.edu/news/headlines/worlds-first-stem-cell-treatment-for-spina-bifida-delivered-during-fetal-surgery-/2022/10 Published December 12, 2022 Accessed March 10, 2023

Scott P Top drugs & medications guide for treating spina bifida Spina Bifida Resource Center https://www spinabifida net/causes/prescription-drugs/ Accessed March 10, 2023

Falchek SJ Spina Bifida - Pediatrics - MSD Manual Professional Edition MSD Manuals https://www msdmanuals com/professional/pediatrics/congenital-neurologic-anomalies/spina-bifida Published September 2022 Accessed March 10, 2023

Et al NTP AANS Patient Resources - Neurosurgical Conditions and Treatments American Association of Neurological Surgeons https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Spina-Bifida . Accessed March 12, 2023.

Spina bifida. National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/healthinformation/disorders/spina-bifida Accessed March 12, 2023

For Health Care Professionals - Spina Bifida Association https://www spinabifidaassociation org/for-health-care-professionals/ Accessed March 16, 2023

Updated clinical care guidance for spina bifida | NCBDDD | CDC Spina Bifida Association https://www cdc gov/ncbddd/spinabifida/clinical-care-guidance html Accessed March 16, 2023

Sickle Cell Disease

CDC. What is Sickle Cell Disease? Centers for Disease Control and Prevention. Published August 18, 2022. Accessed April 16, 2023. https://www cdc gov/ncbddd/sicklecell/facts html

Sickle cell disease In: Handbook of Pediatric Hematology and Oncology Wiley-Blackwell; 2012:18-35

Sexually Transmitted Diseases

Sexually transmitted infections (stis) (no date) World Health Organization World Health Organization Available at: https://www who int/health-topics/sexually-transmitted-infections (Accessed: April 17, 2023)

CDC - STD Diseases & Related Conditions (2023) Centers for Disease Control and Prevention Centers for Disease Control and Prevention. Available at: https://www.cdc.gov/std/general/default.htm (Accessed: April 17, 2023).

Moph (no date) Aids. Available at: https://www.moph.gov.lb/en/Pages/2/4000/aids (Accessed: April 17, 2023).

Did You Know?

Whitworth, J (2022) Ten surprising facts about CF, Cystic Fibrosis Available at: https://cystic-fibrosis com/living/surprising-factscf (Accessed: February 3, 2023)

Jones, M. (2022) Jean Driscoll: U.S. Olympic & Paralympic Hall of Fame, United States Olympic & Paralympic Museum. Available at: https://usopm org/jean-driscoll/ (Accessed: February 3, 2023)

Games

Brand Names Riddle

Tenofovir/Emtricitabine/Efavirenz: Biktarvy

Abacavir/ Lamivudine/ Dolutegravir: Triumeq

Podofilox: Condylox

Acyclovir: Zovirax

Spectinomycin: Trobicin

Ceftriaxone: Rocephin

Doxycycline: Vibramycin D

Imiquimod: Aldara

Doravirine/ Lamivudine/ Tenofovir: Delstrigo

Crossword

Myasthenia Gravis
1 2. 3. 4 5. 6. 7. 8. 9.

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